Goals and Preferences: An International Experience

Goals and Preferences: An International Experience

Don S. Dizon, MD, FACP, FASCO

May 15, 2014

The world is a big place and here in the U.S., we are fortunate to live in a part of it where we have access to technology and advanced medical care, clinical trials, and new therapies, even before they are approved by the Food and Drug Administration. Indeed, even new agents approved for one indication can be prescribed “off-label” in this country.

This is the access that draws some patients who live outside of the U.S. to seek medical care here, especially when they face a life-threatening illness. In some minds, being treated in an American facility can mean the very difference between living and dying.

As a clinician, I have always been challenged by how best to care for international patients (some refer to them as “medical tourists”). While the issues of social welfare, justice, ethics, and the economics of health care are so important, in that room, with that patient and her family, I find myself struggling with how best to provide individualized care to patients, much like one I met in the past, Joanie*.

Joanie was from Laos, where she worked as a housekeeper. She hadn’t felt well for a few months before coming to the U.S. She had experienced vaginal bleeding, which she originally thought was a normal part of menopause. But, the bleeding became heavier, and sometimes, it would go on for days. Then the cramping started, and she became so tired, she could barely get out of bed. Ultimately, she made her way to a local hospital and was found to be extremely anemic. She was admitted and transfusions followed, then more tests and consultants. They removed her uterus “to stop the bleeding.” When she woke, she was told she had uterine cancer, and that it had spread. Beyond removing her uterus, there was nothing much more they could do surgically, and so she was referred to medical oncology. Before her discharge, she asked about prognosis and recalled being told it was terminal.

Once she was released from the hospital  and had returned home she was gripped by the panic and fear that came with the full realization she had advanced cancer. She felt she was going to die if she stayed there. She reached out to her sister, who lived in the U.S. near our center, and with the help of family and friends, she financed a ticket to the U.S. and made her way to clinic.

When I saw her, she looked panicked and sad at the same time. I discovered she was married and had three young kids. She also cared for her elderly parents, and they lived with her and her family. As she got sick, family helped her at home, and after she was diagnosed with cancer, she relied on an extended network of family and friends who willingly stepped in to help her family. Although this helped ease her anxiety about leaving her home, it did little to ease the pain of being away from her family.

After we had spoken, I examined her, reviewed her records, and we talked more. “From what I’ve read, you have advanced uterine cancer, stage IV. I think the doctors did a good thing doing surgery first, but right now, we should talk about medical treatment. We need to confirm the pathology, make sure the diagnosis is correct. I’d also do imaging before we begin treatment to make sure I know the full extent of this cancer.” She asked no questions, merely nodding that she understood.

“Before we proceed, though, tell me, what are your plans? I’d like to get a sense of what your goals are so I can try to help as best as I can.”

She looked at me, then her sister. Finally (with a bit of exasperation), she told me, “My goal is to survive. I won’t go home until I am better. The way I was before.”

I got a sense of just how much she hoped for by coming to the U.S. Her dream of America had nothing to do with a better life for herself or her family, that American Dream of promise and prosperity. Her dream was a return to normalcy, to a life before cancer. It also went beyond recovery—she wanted cure. Unfortunately, I knew that these were not things within her reach.

“Stage IV disease is not curable, Joanie. There are no guarantees. What I know is that it can respond to chemotherapy, and there is a chance we can get it to stop growing, even get you into remission. But it usually comes back and for many women, it stops responding to treatment. If that happens, it will likely be the end. For now, we can hope and we can pray, and I can give you the treatment that I think will give us the best chance of a response.” I went on and described a chemotherapy regimen—one that would keep her in this country for at least the next four months.

She considered what I said and returned with a desire to begin treatment here. “I’ve been praying a lot, and I know this is where I need to be.” We accessed a charity that was able to help cover her medical costs, and I got permission from the institution to begin chemotherapy. As treatment went on, I saw each cycle become more difficult for her. She gained weight though she had lost her appetite; she lost her hair and developed trouble with numbness in her hands and feet. She would tell me of the latest conversations with her kids and her parents, and I could sense how much she missed them. I referred her to social services, and we even prescribed an antidepressant. To say treatment was tough would be an understatement.

Unfortunately, months later, repeat tests showed that the treatment had not worked; her cancer continued to grow. I discussed her prognosis then, letting her know it was poor. While options were still available (another round of a different chemotherapy, clinical trial, or even endocrine therapy), I also let her know that her life would be measured in months, not years.

She looked at me and her eyes told me just how scared she was. She had sacrificed so much—as had her family—for treatment in America. She could not bear to think it would be unsuccessful. “I need to fight; I need to live; you have other drugs right?” she said. “I cannot go home like this. My kids cannot see me like this.”

“Joanie, I know you want to live, to fight this cancer with the best that is available. But, I have seen you suffer physically and emotionally through the treatments thus far. I am left wondering if this is the life you are fighting for?” I asked.

“I need you to think about more than just the days/weeks/months/years that you are here on earth. I need you to think about what makes you happy, where you find joy, and about what would make each day worthwhile. I can try to prolong your life, but only you can tell me if this life is worth living, because with how things are today, I am afraid things will continue to worsen for you, that treatment will increase how poorly you feel, and that any hope you have of seeing your children again will slip away. Right now, the window is open— the one that will allow for you to return home, to be with those that love you—but I am not sure for how long.”

As we spoke, she and her sister started to cry. I left them then, giving them some space to be. When I returned, Joanie was more composed, eyes dried although bloodshot, and she looked at me straight on. Grasping her sister’s hands tightly, she told me with a conviction I had not before seen, “I want to go home.”

Joanie has stayed with me as a reminder of how lucky I am to be an oncologist in the U.S., to have access to state-of-the-art services and the ever-increasing availability of molecularly targeted therapies. However, she also reminds me that even with everything we have to offer, people still struggle, suffer, and succumb to cancer. I’d like to think my approach to her care was not dissimilar to that of a U.S. citizen, but in reality, I think it was. At the end of the day, I wanted to make sure she did not die without seeing her kids, her husband, and her parents again. I wanted to make sure she didn’t suffer. And I offered her the chance to go home far earlier than I probably do for my patients who live in this country.

Beyond that, I must always remind myself that living for the sake of living cannot be the ultimate goal. It has to be informed by quality of life. Only one person can tell me what quality means though, and ultimately, it is that patient. Understanding the social circumstances of our patients can be as informative as understanding their tumor. Whether international or local, all patients deserve consideration of their own goals and preferences, and we must acknowledge them in our own deliberations.

I suppose, it just comes down to one simple fact: when it comes to cancer care, the stakes are just too high.


The ideas and opinions expressed on the ASCO Connection Blogs do not necessarily reflect those of ASCO. None of the information posted on ASCOconnection.org is intended as medical, legal, or business advice, or advice about reimbursement for health care services. The mention of any product, service, company, therapy or physician practice on ASCOconnection.org does not constitute an endorsement of any kind by ASCO. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of the material contained in, posted on, or linked to this site, or any errors or omissions.

Back to Top