Guest Post: In a Patient’s Death, My Life Found New Purpose

I am delighted to host this guest blog from Dr. Eric Bing, physician and professor of global health. We share a passion for fighting disparities in health, a passion is deeply rooted in personal experience, and that comes through in this poignant essay.

 

I was a Harvard-educated physician yet I couldn’t save a patient from an easily preventable disease. In her death, my life found new purpose.

Her name was Lorraine. She was abandoned when she was just six weeks old—left alone in a dark building on a cold winter’s morning. Wrapped in only a soiled blanket, she had nothing to soothe her cries. She might have died if not for those cries, for someone heard her and carried the tiny body to the infant’s grandmother. In Philadelphia in the 1930s, neighbors knew everything about each other, and the existence of this child was not a secret. Her grandmother took her in. She had already raised 15 children of her own, so what was one more? 

As a little girl, Lorraine grew up fast. Even with her sharp mind, like many black girls at that time, she had little money and even fewer opportunities. She slept in the crawl space under her grandmother’s stairs. When she was 12, Lorraine began working as a domestic servant, cleaning houses and caring for children not much younger than herself. She later dropped out of school, and while still a teenager began having babies of her own. 

She was so busy taking care of others that when she began having light, occasional vaginal bleeding, she ignored it.  She had already gone through menopause so this was nothing to worry about. But over time the light bleeding became heavy and the occasional occurrence became alarmingly frequent. After an anxious trip to the doctor, tests confirmed that she had cervical cancer, caused by the human papilloma virus she had acquired years earlier.

Lorraine’s life was once again in danger, but this time from an easily preventable disease.

Cervical cancer can be diagnosed in its earliest stages by a simple Pap smear. In developing countries where Pap smears are too expensive, it is being diagnosed using a few drops of vinegar or prevented in girls with a simple vaccination. And it can be treated at an early stage by freezing lesions off, like a wart. But in order for early care and treatment to work, you must not only have access to care, you must use it. And like many women, she did not do that; the needs of others always came first.

By the time her cancer was diagnosed, it had already spread throughout her pelvis. From there it would move to her liver, bones, and lungs before spreading to her brain and taking her life.

I cared for Lorraine until the day she died, however she had cared for me from the day I was born.

Lorraine was my mother. And her death from an easily preventable disease changed my life.

I was a psychiatrist in Los Angeles when my mother died in 1999. Today I am the senior fellow and founding director of global health at the George W. Bush Institute in Dallas and the founding director of the Center for Global Health Impact at Southern Methodist University.

At the Bush Institute, I helped launch, Pink Ribbon Red Ribbon, an innovative public private partnership to combat cervical and breast cancer in Africa and Latin America by increasing access to cancer prevention and treatment. In developing countries, where Pap smears are too expensive, cervical cancer can be diagnosed by putting a few drops of vinegar on the cervix, which is then examined under a lamp. Lesions appear white and can be treated at an early stage by freezing them off.

A recent study from India showed that this simple vinegar test that costs less than $1 can reduce deaths by nearly one-third. There are also inexpensive vaccines that can prevent the viral infection entirely. We can defeat cervical cancer now in simple, cost-effective ways.

The challenge is access.  In Pharmacy on a Bicycle:  Innovative Solutions for Global Health and Poverty, Rice University business professor Marc J. Epstein and I show how even access to care barriers can lowered in developing countries for many diseases, by shifting care to lower-cost providers, focusing on efficiencies, strengthening existing systems and by stimulating partnerships among governments, businesses, nonprofits, entrepreneurs and women of all ages. And, as my mother's death taught me, we must mobilize women to recognize their risk and realize that by protecting their health, they can live to protect the ones they love.

As my mother lay dying in her home in North Carolina, her house was once again full— with people who had been helped and touched by her over the decades. My mother had scoffed at the notion of filling a funeral home with flowers for the dead. "Give me my roses while I can smell them," she had said.  So people obeyed, coming to bid farewell while she could still hear them.

Despite the steady stream of people at her bedside, she fretted in her final days about what she saw as her lack of accomplishment and lasting impact: She was intelligent but uneducated. She was courageous yet lived in fear. She had done nothing with her life, she felt. She had not fulfilled her life's mission.

When she was finished reliving what she thought was a string of disappointments, I began to re-tell her life story—not as she understood it—but as I saw and experienced it as her youngest son.

I told her that I believed that her life's mission was to unleash passion and purpose in the lives of those she touched. Not only had she raised five children who went on to careers in business, education and medicine; she had applied her quick mind, hearty laugh and steel backbone to helping anyone she came across who was in need.

She taught us that love is what creates a family. She helped us see that a good heart must be coupled with hard work in order to succeed. Those that she had helped were now helping others, and they would in turn help others, and they, still others. Through others, her spirit would live on, continuing to change the world.

As we spoke, I could see a shift occurring within her as she sat there quietly. Softly, a warm smile filled her face, as though she was looking in the mirror and for the first time loved the woman she saw. 

My mother died in my arms, leaving the world far more peacefully than she entered it. In her death, my life found new purpose.

Eric G. Bing is the co-author of "Pharmacy on a Bicycle: Innovative Solutions for Global Health and Poverty" and senior fellow of global health at the George W. Bush Institute. He is also a professor global health at Southern Methodist University and founding director of the Center for Global Health Impact.

A version of this article originally appeared in the LA Times, June 23, 2013, as A cancer that need not kill, by Eric G. Bing.  It is reprinted here with permission of the publisher.

Guest Post: 3 Common Hospice Myths Worth Clarifying

This week, I am honored to host a guest post by Paula Spencer Scott, the Senior Editor at Caring.com, the leading online destination for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. Paula is a 2011 MetLife Foundation Journalists in Aging fellow and writes extensively about health, caregiving, and hospices.


Hospice care is an underused resource that can make a loved one's waning days more comfortable and less stressful. Unfortunately, misconceptions about hospice abound. As a result, many families avoid it or wind up having less-than-ideal experiences.
Frank conversations about hospice care are useful, whether you're wary about choosing hospice in the first place or you've decided to put a hospice plan in place.

The following three myths come up again and again, hospice providers say. If they strike a chord with you, use them as starting points to clarify what to expect from the experience.

Myth: Hospice is only for the tail end of life. 
When to start hospice? Usually, "earlier than you think," palliative care experts say. Sometimes families, or even doctors, are reluctant to bring up the subject for fear they'll be thought of as "giving up." As a result, their loved ones spend only a few days in hospice care, although it's designed to provide a peaceful end-of-life transition for weeks or months.

The general rule of thumb for admittance to hospice is that a patient is diagnosed with a condition that generally will result in six months or less of life. But nobody has a crystal ball -- and nobody gets kicked out of hospice because they're still alive six months and a day later. Many patients check in and out of hospice programs.

Ask your care provider: What comfort care options your loved one has at the same time you're discussing treatment options, especially if he or she wishes to have a noninvasive death experience at home. It's also possible to pursue both comfort care and curative care at the same time, so ask about that.

Myth: Hospice can't know what my loved one needs as well as his or her doctor. 
Hospice focuses on providing comfort and support, rather than curing an illness. It's a form of specialty care, although the patient's doctor can remain in the loop about care management. Regular medical treatment is not usually front and center, however, because the focus is shifting to allowing the person to live with as much privacy and dignity, and as little pain, as possible.

Hospice services differ by individual need and preferences but may include basic care management (such as chores, meals, personal care), counseling, physical or occupational therapy, caregiver respite, spiritual care, and bereavement support. There's some evidence that people at the end of life live slightly longer when enrolled in hospice than they would if not, possibly because there's less stress from futile invasive therapies.

Ask your care provider: What kind of services he or she recommends, how your loved one's primary doctor plans to interface with the case, how communication will flow between hospice and the medical practice, or whether a hospice doctor will now manage care.

Myth: The medication will "dope up" my loved one. 
Pain medication given as part of palliative care is meant to ease suffering -- not to hasten your love one's decline and demise. Dosages are carefully calibrated to manage pain, which makes it easier for your loved one to talk, rest, or spend time with family and friends. Uncontrolled pain is a common reason for poor quality of life at the end of life.

What's more, pain management is only one part of the full picture of comfort care. Your loved one can receive talk therapy, spiritual counseling, and physical support (even things as basic as help avoiding painful bedsores) that help him or her feel better than he or she might otherwise.

Ask your care provider: What the pain medication is for, how to use it, how to know when it's necessary, and what signs of pain and discomfort to watch for.

For more information about caregiving and hospice, visit Caring.com. Thanks to Paula for joining us at The Doctor is Listening!

My Mother's End-of-Life Discussion That Changed How She Died

I am a physician. The hardest thing I’ve ever had to do was to end my mother’s life.

My mother was diagnosed with breast cancer at the age of 47. After a seven-year battle that involved multiple surgeries and countless rounds of chemotherapy, she decided that she had fought long enough. She didn’t want to suffer any more. Initially, I didn’t agree with her decision: she was still young; her doctors were hopeful; and there were still some therapies that she hadn’t tried. Over the course of many painful discussions, I became convinced that she had thought through everything. It was her choice to die peacefully and at home. She signed paperwork to this effect and entered home hospice care.

Unfortunately, as with many patients’ wishes, hers did not get fulfilled. One day, her breathing became labored. My father panicked and brought her to the local hospital. By the time I arrived, her blood pressure was dangerously low and she was barely breathing on her own. The ICU doctors were hovering, ready to put her on a breathing machine.

I could have never imagined how hard it was to ask everyone to stop their efforts and let my mother die. There was paperwork clearly documenting her wishes, yet the doctors and nurses asked me multiple times whether I wanted to change my mind. My father and my sister both knew her wishes too, yet they, too, were paralyzed by the thought of letting her go.

Since my mother’s death, I have been on the other side of these discussions as the emergency physician talking to patients and their families. I have learned that less than 30% of families have these discussions, and as a result, many patients end up with life-prolonging measures that are very likely to be against their wishes. As hard as it may seem to have such end-of-life talks in advance, it is many times harder when the patient is in extremis and the family is distraught.

Last week was the two-year anniversary of my mother’s death. In her memory, I urge you to have a discussion with your family members now about how they want to live, and to die. Make sure your doctor knows, and that you have paperwork documenting these wishes. That way, you will be able to honor your loved one’s final wish, and you will know what to do when you are faced with the most difficulty decision of your life.