Second Interview with Yvette Colón

A. As part of our outreach efforts, a coworker and I represented the American Pain Foundation (APF) on a palliative care fellowship trip to South Africa in August.  The APF is currently working on several research projects, including one on breakthrough cancer pain which is part of our Spotlight on Cancer Pain Program and is significantly increasing its advocacy work, especially in promoting the proposed National Pain Care Policy Act and facilitating collaborative responses to the Food & Drug Administration around pain medication access and safety.

Q. Since that time you also experienced a very personal loss—the death of your mother Antonia from pancreatic cancer.  In an essay you’ve written for HFA’s book, you write about your parents that, “It never occurred to me that I would be both blessed and burdened to be their social worker as well as their daughter” during that experience.  Can you talk about that intersection between your professional work as an oncology social worker and your personal experience as a daughter?

A. During times of crisis, such as dealing with the illness and dying process of a loved one, people may feel very alone as they go through that terrible experience.  There is something paradoxically comforting in knowing that you are not alone. I have found that sharing my personal reflections has sometimes helped normalize what is always a terrible situation—facing the death of a loved one.  

My family and co-workers were incredibly supportive, and I was lucky that my professional contacts offered both information and emotional support.   It was helpful as a professional to be familiar with the jargon, the language of cancer.

Q. What were some of the burdens?

A. My professional experience as an oncology social worker did help a little, but just a little.  I knew who to call, how to find resources, how to advocate, but it was not like some magic door opened to make it all better.  Whenever I would say, “I am Antonia’s daughter AND an oncology social worker,” there would always be a slight shift in tone and I received much more direct and sophisticated information about my mother’s illness and prognosis.  Ultimately I still needed to become my mother’s advocate, to assess and support what she wanted and to find ways to help her meet those goals, and that was made only a little easier because of my professional knowledge.

For those of us who work in oncology, when faced with news like my mother’s diagnosis (advanced pancreatic cancer), we know all too well what that diagnosis means. There isn’t the luxury to entertain the idea that there could be great hope or even possibility for treatment and cure, or that the disease could become more chronic and manageable.  I knew what the prognosis was, although even I was surprised at how quickly my mother’s illness progressed once she was diagnosed.

None of it seemed fair—my mother was only 74, a “young” 74, when she died.  The illness happened so quickly, and she declined so fast.  At one point, I drew a diagram to concretely say to her, “This diagnosis does not give us an option of death ‘sooner or later.’ It’s a matter of thinking that it will be ‘soon or sooner’ and that makes a difference in the decisions you will want to make.” As an oncology social worker, facilitating a conversation like this is enormously difficult with strangers, but with my mother it was so much worse to have to go through it personally.

Q. You talked about the need to be your mother’s advocate, especially when she was in the hospital.  Why was that so important?

A. Advocacy on behalf of a patient is necessary is because it is not part of the focus of care in a hospital setting.  Hospital personnel have specific tasks, which generally focus on getting people better and getting them out of the hospital setting.  And the issue of reimbursement is a critical piece of this. Reimbursement for providing ongoing emotional support to family members is again not a focus.

Advocating for a family member is also necessary because during a long-term illness, patients and family members may be involved with multiple health systems, and rarely do those systems talk to each other. So there is not a lot of overlap or support when transitioning from one system to the next.

Q. You write very frankly about the barriers that you met in dealing with the healthcare system.  You say, “I knew there were ways to overcome those barriers.  My experience, however, is sadly not the norm for most patients and families, who have to navigate through a complex, unknown healthcare maze”  What advice do you have for patients and families who are navigating this journey for loved ones with end-stage cancer or other illnesses?

A. Helping my parents navigate the system was filled with ambivalence for me. I had the ambivalence of wanting my mother to live, and have hope for her future, but also wanting to be sure we met her goals of dying at home. For instance, in my essay I wrote about how she really struggled with the issue of the TPN (artificial nutrition). Once she decided to not do chemo any longer and wanted to go home, having TPN posed a barrier to those goals. But giving up that TPN and everything it symbolized - comfort, care, extending life - became very difficult. My mother was very clear about her goal to focus on quality of life, however, and having that knowledge helped me to advocate for her and to help her make some difficult choices.

Q. You are a long-time cancer survivor. How did your own experience in dealing with cancer impact your experience in dealing with your mother’s situation?

A. Being a cancer survivor was helpful in many ways, but also painful.  I was diagnosed with a rare form of ovarian cancer and had faced death at age 27, so I had to struggle not to assume that I knew what my mother was thinking or feeling; each person’s experience with illness is so different and personal.  My parents saw a surprising strength in me when I dealt with my cancer, and we saw that same sense of strength when my mother had cancer.  But it was always tempered with reality.  Once when we were talking about how hard this experience was on my father, how difficult it was going to be for those who loved her to have her gone, she said, “Well, yes - but it’s difficult for me, too!”

Q. The time between your mother’s diagnosis and her death was very short—just under one month. How did your own experience with cancer impact you when it became clear that the goals of your mother’s care were changing from curative to palliative?

A. As a cancer survivor, I appreciate the messages from many cancer organizations that focus on hope, cure, extending life. These messages point to the aspect of the disease where cancer really can become a manageable, chronic illness, which is true for many survivors. My own cancer experience was very intense and difficult, but all of these years later I am okay. Cancer can be a scary and terrifying diagnosis, but so many myths and misconceptions still exist. People still assume that a diagnosis of cancer equals a death sentence, and that is not always true anymore.

Although she didn’t express it, I think my mother may have felt somewhat cheated that she wasn’t given that opportunity to “fight.”  Her death followed so closely after her diagnosis—she really didn’t have that option.  But I think that “non-survivorship” side of the disease needs to be told in a different way.

Q. It was very important for your mother, and for you, that she was able to be cared for and die at home. What sort of support did hospice provide in those last days to help you achieve that goal?

A. Once my mother had made her decision not to pursue chemotherapy and to enter hospice and focus on quality of life, she was in command. The hospice personnel spoke with her at length to understand her wishes and to create a plan that allowed her to die at home, comfortable and pain-free. My mother was able to “hold court” in her home. She did decline quickly, but I believe she saw everyone she needed to see. And she was very involved in her final arrangements - the planning of her service, what music she wanted, what dress she would wear when she was buried.

Hospice was a great support to us as well. In addition to my own difficulty in dealing with my mother’s death, I had to help my father, who was truly devastated. Unlike in the hospital, where it was useful for me to be known as both “the daughter” and “the oncology social worker,” I was able to say to the hospice social worker, “I want to be a daughter, not a social worker”. I needed her to do her job in helping and supporting us as a family, and she did a wonderful job; in fact, we are still in touch.

Q. Did the support and information that you were able to access during your mother’s dying process impact your grief process? What advice do you have for professionals who are working with families in these situations?

A. Personally, I wasn’t invested in having a “transformative” experience with my mother—I was focused on getting her what she wanted, which was to leave the hospital and die at home without pain. We were able to help her meet those goals, and that means so much to me to this day. And in many ways, it was indeed transformative for us.

Professionally, my colleagues in oncology and end of life care are careful not to set high expectations for what many call “a good death.”  Social workers and others shouldn’t push for transformative experiences to happen when someone dies, but I do often think about how we can help facilitate opportunities within a family for that transformation to take place.  Some ways that have worked for me professionally in helping families have been to completely respect where people are; to offer different ways of thinking about the dying process that help patients and families focus on quality of life; to find the appropriate language to help guide them, language that still can ensure some hope, even if the focus of care has changed. I also try to assess what support the family already has in place—have they discussed advance directives, has the patient  named a healthcare proxy and written a will, what is their financial situation, what internal and external resources are available to help them with this process?   Offering a calm voice in the discussion can be a great service; it’s very hard for people to make clear decisions in the midst of a healthcare crisis.

Not everyone is cut out to do this work professionally. It can be enormously difficult, but profoundly rewarding. I always try to remember that a diagnosis of cancer, or a prognosis that cancer is now terminal, may not actually be the worst thing happening to that person.  End-stage cancer can happen to someone who is homeless, who is dealing with mental illness, who may be developmentally delayed, who has few resources to cope. Our job as professionals is to understand how the cancer experience impacts patients and families where they are and be ready to facilitate those complicated conversations.

^{November 2009}