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Wednesday, May 11, 2016

This week's blog post is an interview with Lillie Shockney, BN, RN, MAS. Lillie is the administrative director of the Johns Hopkins Breast Center and Cancer Survivorship Programs and a two-time breast cancer survivor. She the author of 14 books, including Fulfilling Hope: Supporting the Needs of Patients with Advanced Cancer. This interview also appeared in our monthly Cancer Experience Registry Newsletter.

"By definition," Lillie Shockney says, "hope is something in the future, something that motivates us to go forward in some manner. When someone is facing cancer, it's important from the outset to learn what that person's life goals and hopes are and to think about whether these hopes can be fulfilled. Are they realistic? Sometimes, you have to step back and take a different path."

Lillie Shockney has thought a lot about hope. While she strongly believes that there is always room for hope, she knows that for people with cancer, hope and honesty are closely entwined. "It's really important that physicians take the time to talk to their patients about what they can expect from a treatment. It can be a real challenge, especially with metastatic disease, to convey hope that the treatment will help without creating an assumption that response means a magic bullet, a cure. Clinicians need to understand what their patients hear and what they are hoping for."

Shockney says that good communication and asking a few open-ended questions contributes enormously to clarifying these issues. "I have four questions written on the back of my badge. 'What are you hoping for? What is most important to you? What are you most worried about? What brings you joy?' It's amazing what you can learn by asking those questions and giving people a chance to answer them. Being honest doesn't take away hope. It helps people transition through the phases of hope. Dishonesty is a form of betrayal."

For many people diagnosed with advanced cancers, the first phase of hope means hoping for a miracle--hanging on to the belief that they will be ones who beats the odds. When that doesn't happen, it's important for a person to embrace the idea of living for as long as possible with good quality of life. The next stage, which occurs if the disease progresses, is for the patient to accept the possibility of a shortened survival while still wanting the best possible quality of life during that remaining time. Finally, patients, as they near the end, can hope for a good death.

Shockney asserts that a good death is a realistic hope and that medical teams have a responsibility to work with patients and families to orchestrate that event. "We work as a team," she says, "and there are several very concrete elements that can make for a good death. It should be pain-free and in the environment that you choose. 91 percent of people choose being in hospice at home, if they are asked, but only 20 percent are ever asked.

"We also talk about giving and getting forgiveness. 'Who is important to you? What relationship in your life do you want to heal before you go?' Many people are very concerned about how they will be perceived after they die, so we let them address those issues.

"We also find that many of our patients don't want their families to suffer financially from their cancer treatment. The patient may choose to stop treatment, but there are times when the family gets upset or feels like we are abandoning that person, and the patient ends up consenting to treatment that is expensive, doesn't work and can compromise the quality of the remaining life. All of these matters have to be dealt with honestly and directly--and they are very much part of sustaining hope throughout life."

In some instances, the goal is to assist people with achieving goals in different ways. "I may have a person with advanced cancer say he or she wants to be there for a daughter's graduation--and the child is 10 years old. We may not be able to make that happen, but we can help that person be there in other ways. We often encourage people to write letters or cards to people they love for special occasions over the years to come--birthdays, graduations, weddings--whatever is important. They know that they will leave a legacy to the people they love that has nothing to do with money and that their voices will be heard and valued."

Shockney also stresses that maintaining hope throughout life and getting to a good death doesn't happen in a few days. It takes time, planning--and again honesty. It also requires that the patient and family members have a mutual understanding and acceptance of what is happening. "Sometimes I have to be tough with family members. They just want to keep the person they love in existence. We work on respecting the loved one's life, on giving the patient control. I tell them when it's their turn; they can make their own decisions. When my own father was dying, my mother didn't want him to stop treatment, and he said to her, 'You need to love me enough to let me go.' Once we reach that understanding, things get better."

The bottom line, Shockney says, is that "we make it harder by not addressing what is important to every patient at every stage of treatment. They say there is a tiny spot in the brain associated with hope and that it is the last place firing when you die. Hope is possible for everyone. You cannot live without hope."