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Picture this. You’re in the hospital because of a serious accident or illness, and you’re not able to talk or communicate in any way. How do you tell your health care provider what treatment you’d like? How will your loved ones know what you want? On National Healthcare Decisions Day, patients and non-patients can learn how to plan for these situations and why it’s important to ponder these questions.
Legal documents called advance directives are an important part of this planning. “Advance directives help people say what medical treatments they want or don’t want at the end of their life,” says Amy Horyna, MSW, LCSW, manager of Huntsman Cancer Institute's (HCI) Patient and Family Support Services. “They let you express your wishes when you aren’t physically able and relieve your family of the burden of making these decisions for you.”
Advance directives can consist of a healthcare power of attorney (also known as proxy, agent, or surrogate) or a living will. In a healthcare power of attorney, you appoint someone you trust to act for you and to make decisions about your medical treatment if you are unable to do so. A “living will” allows you to write down your wishes regarding medical treatment (such as whether or not you want to remain on life support if you are ever in a persistent vegetative state). Advance directives are easy to fill out and do not need to be notarized. All you need is a witness who is not part of your family or your medical provider.
Memorial planning is another important thing to consider. An HCI patient with stage IV metastatic cancer approached Shelley White, MSW, LCSW, former manager of Patient and Family Support Services and current manager of the Linda B. and Robert B. Wiggins Wellness-Survivorship Center, about a form that she could fill out that would help her family know what kind of services she wanted after she passed. No such form existed, so White offered to work with her to make one. The result was HCI’s End of Life Guide.
“The End of Life Guide helps patients consider how they want to be remembered and communicate it to those they love,” White says. According to White, some patients forgo the traditional funeral and opt for a living wake or going away party.
Advance health care planning may do even more than bring peace to you and your family—it may help those who are ill to get better faster. “There’s so much psychological energy that’s held by not talking about the worst-case scenario,” says White. “So actually talking about it alleviates a lot of the distress and allows the person to focus all of their energy on healing.”
You can find advance directives and HCI’s End of Life Guide online or by asking your health care team. For more information, visit the Patient and Family Support Legal Health Documents page.
HCI Investigator Studies Long-Term Effects of Prostate Cancer Treatment
Huntsman Cancer Institute investigator Nan Stroup, PhD, contributed to a study recently published in the New England Journal of Medicine. Stroup is director of the Utah Cancer Registry and researches where and how cancer occurs in different populations.
The study looked at long-term effects of prostate cancer treatment. Researchers tracked 1,500 men over 15 years, comparing rates of urinary, bowel, and sexual function in men who had undergone surgery and those who had received radiation therapy.
Though the two groups had different rates of urinary, bowel, and sexual dysfunction in the short term, the differences were no longer significant after 15 years. But the study showed that dysfunction had increased quite a bit for both groups. The study authors suggest physicians use this information when discussing treatment options with men who have localized prostate cancer.
Stroup says this study is significant because of how long the patients were monitored. “We were able to assess long-term outcomes beyond the usual five-year benchmarks for most cancer survivorship studies,” says Stroup. “With a growing number of men living well beyond five and even ten years after a diagnosis of prostate cancer, it’s important that we learn more about long-term morbidity issues as result of treatment.”
The Employers Council, a local business association, provided a day of service at the HCI Apartments to honor Martin Luther King, Jr. Day.
President and CEO Monica Whelan and five of her staff visited the apartments Monday, providing much-needed assistance: organizing and labeling clothing donations; putting together hygiene kits for apartment guests; and scrubbing doors, walls, and stairways.
Adrienne Wilson, manager of the HCI Apartments, says, “This service is really appreciated. It allows us to focus on patient needs.” If you’d like to donate products or services to the HCI Apartments, contact Adrienne at 801-530-0385.
An HCI patient received a handmade quilt all the way from Genova, Italy. Camille Scrip, RN, explains, "Patients in the BMT unit get handmade, donated quilts on the day of their transplant as a way of wishing them a happy 'second' birthday."
Recently Scrip noticed the BMT unit was running low on quilts, so she searched online for someone who makes quilts for charity. She e-mailed a group called Quilters without Borders and got a reply from a woman in Italy named Luisa, who sent three handmade quilts. HCI patient Susan Vincent received one of these quilts; the other two will be given to other HCI transplant patients.
Trouble understanding cancer? It sounds like a job for…MediKidz! Jeff Yancey, the new manager of HCI's Cancer Learning Center, recommends these graphic novels for tweens, teens, and adults of all ages. Made by a partnership of Medikidz and the American Cancer Society, the books take the reader on an adventure through the body to understand the science behind cancer development and treatment. As Medikidz Explain Melanoma says, “It’s scary to be told that someone you love has cancer, but it’s less scary once you understand what that means.”
Books are currently available in English for breast cancer, melanoma, and leukemia, and in Spanish for brain tumors and osteosarcoma. Contact the Cancer Learning Center to check them out.
About the reviewer: Jeff Yancey, M.Ed., CHES, is the new CLC manager. Yancey has worked as a Health Educator/Cancer Information Specialist at Huntsman Cancer Institute (HCI) since 2008. He is a Certified Health Educator with a BS in Community Health Education and a M.Ed. with an emphasis on reading and literacy.
"As manager, I am looking forward to continuing to make the CLC a leader in patient education in our community and across the country," says Yancey.
Gerhard Hildebrandt, MD, is the new medical director of the Blood and Marrow Transplant (BMT) Program at HCI and the U of U. He is an associate professor of internal medicine and an HCI investigator.
Hildebrandt's research focuses on graft versus host disease, a serious complication that can occur after an allogeneic bone marrow transplant. He also studies the development of lung injury in these patients, which can occur even years later.
Hildebrandt says he felt an "instant connection" when he came to HCI and met Chief of Hematology and Hematologic Malignancies Michael Deininger, MD, PhD, and the BMT Program team. "I think HCI is a very good place for me to grow my interest in transplant and to put my emphasis here on graft versus host disease." Hildebrandt says the BMT Program aims to develop a multidisciplinary graft versus host disease clinic and a long-term BMT survivor clinic "to provide excellence in care and continuity involving experts from different specialties."
Hildebrandt says part of the reason he enjoys working in transplant is that "you develop a really close relationship with your patients. You become like a family physician to them and sometimes even like a family member. It's a really difficult field—patients can be very sick sometimes—but this close relationship and what you can do for your patients and their families is really why I enjoy it."