End-of-Life Oncology is a new occasional column in The ASCO Post that will explore how to ensure the care received by terminally ill patients is in alignment with their end-of-life goals and wishes. In this inaugural installment, The ASCO Post talked with Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG, about how the Metastatic Breast Cancer Retreat helps patients with advanced breast cancer prepare for death while still living their best life possible for as long as possible.
Despite the burgeoning “death positive” movement, spurred by a new openness to discuss death and dying in popular places such as death cafes, which have quickly spread across the globe—there are nearly 5,000 death cafes in the United States alone1—death is still a thorny topic for many patients facing terminal cancer. Raising the issue of goals of care as cancer becomes advanced and cure less likely is also challenging for oncologists, who likely did not receive specific skills-based training in how to initiate these difficult conversations and may be uncomfortable doing so. However, not having these important conversations only intensifies the fear and isolation many patients feel as their disease progresses and treatment options dwindle, according to Lillie D. Shockney, RN, BS, MAS,HON-ONN-CG, the University Distinguished Service Professor of Breast Cancer and Professor of Surgery at Johns Hopkins University School of Medicine, and former Administrative Director of Breast Cancer and Director of Cancer Survivorship Programs at Johns Hopkins.
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Nearly 12 years ago, Professor Shockney, a two-time breast cancer survivor, developed the Metastatic Breast Cancer Retreat for patients with stage IV disease and their spouses or female caregivers. It is intended to provide a safe haven where patients can express their end-of-life wishes, find support, examine their worst fears (including fear of the dying process), and accomplish significant short-term goals to gain control over their lives.
The 3-day, 2-night retreat has generated so much interest throughout the metastatic breast cancer community that, in addition to the semiannual retreats she organizes for Johns Hopkins, Professor Shockney now helps launch similar weekend retreats for cancer centers in more that 10 states nationwide. Her pioneering work to improve the lives of patients with advanced breast cancer has earned her numerous awards. Most recently, Professor Shockney received the WebMD Health Heroes Caregiver Award (see “WebMD Recognizes Several Cancer Innovators With Its Heath Heroes Award,” in the March 25, 2019, issue of The ASCO Post), the National Breast Cancer Foundation Lifetime Achievement Award, and the Academy of Oncology Nurse Navigators (AONN+) named its Lifetime Achievement Award after her. She has also been inducted into the Maryland Women’s Hall of Fame, which honors women who have made a significant and lasting contribution in medicine, philanthropy, or science and was chosen by Johnson & Johnson as the Most Amazing Nurse in America.
The number one fear patients have, regardless of age or marital status, is pain and suffering at the end of life and being unable to prevent it.— Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
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In addition to her work with the Metastatic Breast Cancer Retreat, Professor Shockney has assisted multidisciplinary teams at Johns Hopkins in launching their own couples’ retreats for patients with other advanced cancers, including pancreatic, colorectal, and gynecologic cancers.
In this inaugural column of the new feature End-of-Life Oncology, The ASCO Post talked with Professor Shockney about how the Metastatic Breast Cancer Retreat helps patients with advanced breast cancer prepare for death while still living their best life possible for as long as possible.
Making the Distinction Between Palliative Care and Hospice Care
What are the greatest fears of patients diagnosed with terminal breast cancer?
I am starting my 12th year of facilitating the Metastatic Breast Cancer Retreat, and what I have learned during that time is that the number one fear patients have, regardless of age or marital status, is pain and suffering at the end of life and being unable to prevent it. Pain and suffering are also the biggest concerns patients’ loved ones have for them as well.
Once I hear about their concern, I launch quickly into a discussion about how they would benefit from palliative care. Right away, they say, “No, I’m not ready for hospice care yet.” I explain that palliative care is not the same as hospice care and that the mission, purpose, and goal of palliative care are to preserve or restore quality of life during and after treatment throughout the patient’s life, especially as it relates to pain management. Palliative care professionals are trained to assess the actual cause of pain and determine remedies to alleviate that pain, often without simply masking it with opioids, but by figuring out the source of the pain. They are also trained to address other areas of concern patients have, including loss of appetite, fatigue, and neuropathy, so they can continue to enjoy each day for as long as possible.
I give the group examples of people who have been helped by palliative care, including my father, who had advanced prostate cancer and suffered a T5 spine fracture that caused him excruciating pain. His oncologist increased his opioid, but that only made him sleep more and reduced his quality of life so much that he wanted to end his life. I took my father to a palliative care specialist I know at Johns Hopkins who asked him a series of questions we are all trained to ask: How much do you know about your cancer? How much do you want to know about your cancer? What are you most worried about? What are you hoping for? What brings you joy?
My father was a German farmer, and he told the specialist that he wanted to be able to be back out in the field tending to his crops and conducting his farm loan business. He also wanted to resume spending quality time with his granddaughter and two great-grandchildren. The palliative care specialist arranged for my father to have a spinal nerve block and vertebroplasty to stop his back pain and get him off the narcotics he had been taking. Within 10 days, he was in the field picking corn and thanked the physician for giving him his life back. My father died 6 years ago, but palliative care allowed him to live a quality life for most of those years.
Patients’ second greatest concern is worry over leaving their young children before they can instill their values and that their children won’t remember them. During our sessions, I tell these women that we will help them put together the resources they need to ensure they will always be alive and present in their children’s lives through cards for each life milestone, the letters and videos we help them create, and the commitments we elicit from family members who they will raise the children with the same value system as the patient.
Over a decade ago, Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG, developed the Metastatic Breast Cancer Retreat for patients with stage IV disease and their spouses or female caregivers. It was created to provide a safe haven where patients can express their end-of-life wishes, find support, examine their worst fears of death, and learn how to have a better quality of life until the end of life.
The third most common fear patients have is that their family will go bankrupt paying to extend their lives for a little bit. One of the elements we recognize as necessary to experience a good death is that the patient does not leave her family in financial debt associated with her cancer care.
Another area we discuss is knowing what their life purpose is and that their life was valued by at least one other person. I go around the room and ask each patient these questions: Do you know your life purpose? Why are you here? What have you accomplished? What are you accomplishing now? Some of the women will say, my current philosophy or purpose is to live each day instead of dying each day with my cancer, and we talk about leaving behind a lasting legacy that is meaningful to them.
I also assure them that they deserve to be free of pain until death and to die in an environment of their choosing. They should not be afraid to talk with their oncologists about their end-of-life wishes and goals, even if their oncologists don’t bring up these issues first.
During the 3-day retreat, I help patients, their spouses, and caregivers find ways to escape from cancer for a little while through humorous activities, such as playing the Almost Newlywed Game, engaging in stress management techniques, and networking with each other to find ways to continue more peacefully on a journey they didn’t chose to take.
Creating a Lasting Legacy
What constitutes a “good” death?
I’ve written a textbook, Fulfilling Hope: Supporting the Needs of Patients With Advanced Cancers, which has an entire chapter devoted to orchestrating a good death for patients. In the chapter, I write about how instead of saying to a terminally ill patient, “I’m so sorry, you are going to die,” which isn’t going to help the person, offer to help the patient have a good death. What that means is some of what I talked about earlier: reassuring the patient that her children will not forget her, ensuring that her financial and legal affairs are in order, and asking for forgiveness or extending forgiveness to others. To have a good death, it’s important for patients to resolve personal conflicts and be at peace with their life decisions.
Initiating End-of-Life Conversations
Many oncologists are not comfortable discussing end-of-life issues with their terminally ill patients. Please talk about the importance of physicians raising goals of care with their patients and when to start such a conversation?
Patients will often ask their oncologists “How long do I have to live?” when they learn they have advanced cancer. Usually, oncologists may say “I’m not God, so I don’t know,” which doesn’t help the patient. I’m not God either, but when patients ask me that question, I say, based on my years of experience caring for patients with your prognostic factors and age, I estimate, for example, weeks, months, or years.
Patients deserve to know how much time they likely have so they can plan the rest of their life and not wait to take a vacation they have been planning until they are too sick to go, for example. In terms of when to start these difficult goals-of-care conversations, they should begin once the cancer has progressed and treatment options diminish, and then at each transition point in the patient’s care.
Helping Patients Move Through the Phases of Hope
Is it irresponsible for physicians not to talk to patients about their end-of-life goals of care?
I feel it is because patients deserve honesty from their medical team, and there is evidence-based research demonstrating that being honest with patients does not take away their hope. It helps patients move through the phases of hope so they can transition to their new reality, and that should be our charge. The phases of hope follow: I’m hoping for a miracle; I’m hoping to live as normally and for as long as I can with my cancer; I’m hoping to preserve a high quality of life for as long as possible; and, finally, I’m hoping for a good death.
Physicians are not honest with terminally ill patients if they continue to prescribe treatment with limited or no results, only to have patients die in the intensive care unit of their hospital. When a patient of mine dies, I take pride in knowing that I helped that patient orchestrate a good death. ■
DISCLOSURE: Professor Shockney has participated in a speakers bureau for unbranded topics for and been reimbursed for travel, accommodations, or other expenses by Pfizer; and holds intellectual property interests with Jones & Bartlett Learning for the sale of medical textbooks and patient education books that she has authored.
1. Death Cafe: Death Café United States. Available at https://deathcafe.com/c/United_States/. Accessed September 19, 2019.