Cancer Care at the End of Life: When is Enough, Enough?
A roundtable dedicated to cancer care at the end of life presented at the NCCN 15th Annual Conference highlighted the need for personalized care, honesty, and maintaining hope. Sam Donaldson of ABC News moderated the emotional discussion between notable cancer survivors, family members, managed care representatives, and clinicians.
March 12, 2010
HOLLYWOOD, FL — Despite the advances and groundbreaking research being performed in the area of cancer treatment, sometimes cancer cannot be cured. In this situation, patients and their families are faced with complex emotions and a variety of end of life issues and decisions. ABC News veteran and anchor Sam Donaldson shared his own perspective as a cancer survivor while moderating a roundtable of notable panelists at the NCCN 15th Annual Conference: Clinical Practice Guidelines & Quality Cancer Care™ on March 11, 2010.
Mr. Donaldson stated that although he was successfully treated for melanoma, the concept of death did enter into his mind upon diagnosis. He began the session by questioning the panelists on how much information patients want or need to know about the subject.
“Ninety percent of my patients want to know the truth about what they can anticipate,” noted David S. Ettinger, MD, of The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. “You can provide them with data and statistics, but it is imperative to remember that a patient is not a statistic.”
Olympic Gold Medalist and cancer survivor Scott Hamilton concurred stating, “I wanted to know everything I possibly could upon diagnosis,” but reminded everyone that it is a personal decision for each patient and their family.
“Physicians need to realize that this discussion of end of life care with their patients needs to be approached as an art, not a science,” stressed Kayce Freed Jennings, wife of the late Peter Jennings.
Sloan Beth Karver, MD, Program Leader of the Palliative Care Program at H. Lee Moffitt Cancer Center & Research Institute, described her daily approach with the patients she encounters facing the end of life. “Clinicians need to look for cues from the patient and tailor their approach based on their feedback,” she noted. Dr. Karver further stated that patients appreciate honesty.
Deborah Morosini, MD, of the Lung Cancer Alliance, AstraZeneca Pharmaceuticals, and the sister of the late Dana Reeve, suggested that the concept of personalized medicine needs to be viewed beyond targeted therapies. “Physicians need to take a highly personalized approach with their patients facing end of life issues and ask them directly what and how much they need and want to know.”
Lee N. Newcomer, MD, senior vice president, oncology services with UnitedHealthcare, echoed the opinions of his fellow panelists stating that the two questions patients typically ask is ‘what will happen to me?’ and ‘how will you help me?’ noting that physicians owe them honest answers to both.
Jai Pausch, the wife of the late Randy Pausch, acclaimed Carnegie Mellon University professor and author of The Last Lecture, recounted the moment when she learned about her husband’s diagnosis and the impact of hearing the word cancer for the first time. “Once the physician actually said the word cancer, I got stuck on it and couldn’t process anything past it,” she noted. “Randy and the physician continued to speak, but each time ‘cancer’ was mentioned, I would lose focus and need to catch up to their conversation.”
Mrs. Pausch also described the emotions when they learned that the cancer had returned and how it was in some sense, “a relief” for her husband. “When the cancer might come back was constantly in our thoughts and a major stressor,” said Mrs. Pausch stating that for her, it took some time to emotionally accept that “the game has changed.”
Mr. Donaldson drew upon this “game changing” time in a patient’s life where treatment options have been exhausted and end of life issues come to light and questioned the financial implications of continuing care.
Dr. Newcomer emphasized that the current model in the United States is to allow patients access to all treatments, but only if they have a good health insurance plan. “The United States is not good at saying ‘no’, but for the financial stability of our country, we need to figure out how much is too much,” said Dr. Newcomer.
Mrs. Pausch described their experience with the costs of treatment mentioning that one of the medications her husband took cost upwards of $2,000 each week, only to find out that it wouldn’t be efficacious based upon his body chemistry.
Maintaining realistic hope and a positive attitude were central themes among the panelists.
Mrs. Jennings noted even when they neared the end of her husband’s battle with lung cancer that they never lost hope. “I think it’s more about accepting the situation, as opposed to giving up hope,” she stated. “Peter continued to receive chemotherapy and radiation that was palliative in nature, and it certainly extended the quality of his life.”
Dr. Morosini described the positive attitude that her sister had stating that, “Dana continued her everyday life until the very last moment and died with hope.”
Humor was the key to Scott Hamilton getting through his diagnosis with testicular cancer as he reiterated that he wouldn’t allow downtrodden visitors and said, “If I was going to go down, I was going to go down laughing.”
Despite his positive attitude, Mr. Hamilton admitted that he reached a breaking point during his third round of chemotherapy. “I was tired, bloated, and I didn’t like myself anymore,” he said. “But, I just told myself that it is cancer succumbing to the treatment and that I just needed to maintain my optimism.”
Shifting gears to the effect of end of life issues on caregivers, Mr. Donaldson questioned the clinicians on the panel on how they handle the emotions of patients and family members nearing the end of life.
Both Dr. Ettinger and Dr. Karver stated that although it is not easy, their reward is when patients and their families express their appreciation for all of their efforts.
“The hardest job in the world is to be a patient, but it’s also a challenge to understand all of the things that we as clinicians experience when we open ourselves up to relationships with our patients,” noted Dr. Karver.
Trying to communicate with small children about a family member with cancer is another difficult task faced by caregivers.
“Randy and I worked with cancer counselors who told us that young children don’t understand the permanence of death and comprehend the concept of time differently,” explained Mrs. Pausch. Adding to their challenge was the inconsistency between her husband’s healthy external appearance and his internal disease. “It was hard to explain to the kids that Daddy was sick, when he was outside riding his bike.”
Mrs. Jennings added that although she didn’t have young children at the time of her husband’s death that she had to transition from caregiver to loving wife to a single woman within a short period of time. She stated, “I had to figure out who I was going to be on my own.”
About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives. For more information, visit NCCN.org.
The NCCN Member Institutions are:
- Fred & Pamela Buffett Cancer Center
- Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute
- City of Hope Comprehensive Cancer Center
- Dana-Farber/Brigham and Women's Cancer Center | Massachusetts General Hospital Cancer Center
- Duke Cancer Institute
- Fox Chase Cancer Center
- Huntsman Cancer Institute at the University of Utah
- Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance
- The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
- Robert H. Lurie Comprehensive Cancer Center of Northwestern University
- Mayo Clinic Cancer Center
- Memorial Sloan Kettering Cancer Center
- Moffitt Cancer Center
- The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute
- Roswell Park Cancer Institute
- Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine
- St. Jude Children's Research Hospital/The University of Tennessee Health Science Center
- Stanford Cancer Institute
- University of Alabama at Birmingham Comprehensive Cancer Center
- UC San Diego Moores Cancer Center
- UCSF Helen Diller Family Comprehensive Cancer Center
- University of Colorado Cancer Center
- University of Michigan Comprehensive Cancer Center
- The University of Texas MD Anderson Cancer Center
- University of Wisconsin Carbone Cancer Center
- Vanderbilt-Ingram Cancer Center
- Yale Cancer Center/Smilow Cancer Hospital