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 among notable cancer survivors, family members, managed care representatives, and doctors.
Read the recap, below, or watch the video here.
Experts Discuss Issues at the End of Cancer Care
You may have heard the phrase “personalized medicine” as one of the new buzzwords in medicine in general and in cancer care in particular. But the idea of personalized cancer treatment must be viewed as more than selecting the best therapies for your specific cancer type (targeted therapies). Recently, a panel of experts—doctors, cancer survivors, and spouses of cancer patients---came together at the NCCN Annual Conference for an audience of primarily cancer care providers to talk about how “personalized medicine” should extend into end-of-life issues and decisions.
Although members of this distinguished panel voiced different personal perspectives on these challenging issues, they agreed that key ingredients include honesty, individualized needs, and balancing hope with reality for patients being treated for cancer.
How Do You Tell a Patient the End Is Near?
ABC News veteran and anchor Sam Donaldson shared his own perspective as a cancer survivor while moderating the roundtable. He 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. The general consensus of the panel was that honesty is the best policy.
“Ninety percent of patients want to know the truth about what they can anticipate,” stated David S. Ettinger, MD, of Johns Hopkins University School of Medicine. When sharing statistics, it is important to remind patients that these are general guidelines and that there are exceptions, both positive and negative.
Dr. Lee N. Newcomer, MD, MHA, of UnitedHealth Group, agreed that physicians owe their patients honest answers about what can be done for them. If death is near, they should be told that so they can decide what they want to do in terms of further treatment and family matters. According to Scott Hamilton, Olympic Gold Medalist and cancer survivor, this approach was best for him. “I wanted to know everything I possibly could when I was diagnosed with cancer,” he added. Sloan Beth Karver, MD, of the H. Lee Moffitt Cancer Center, mentioned that patients appreciate the honesty of their physicians.
The panel agreed, however, that the level of desired information is a personal choice that may differ with each patient. “Patients are not statistics,” Dr. Ettinger noted.
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.”
Deborah Morosini, MD, of AstraZeneca Pharmaceuticals and the sister of the late Dana Reeve, said that physicians should ask the following questions at the beginning of treatment: “What do you need and how much do you want to know?” Furthermore, patients themselves may assist physicians with determining their comfort level with such discussions. Physicians should look for cues from the patient and family and seize the moment to provide education, urged Dr. Karver. “Patients will lead us to how much information they want,” added Dr. Newcomer.
The intangibles about such delicate conversations were addressed as well. “This discussion is an art, not a science,” stated Kayce Freed Jennings, of The Documentary Group and the wife of the late journalist Peter Jennings. She added that an essential role for health care professionals is to calibrate the information to fit what the person wants to know. Dr. Karver concluded that it is crucial for physicians “to listen, to be patient, and to look for opportunities in the conversation to discuss the reality of the situation,” including how best to improve quality of life and the role of hospice care.
Does Aggressive Care Make Sense for Late-Stage Disease?
Next, the panel turned to the complex question of whether aggressive care makes sense, both clinically and economically, for patients with late-stage cancer. In terms of benefit, both Dr. Ettinger and Ms. Jennings believe that the key component is extending quality of life for as long as possible. How aggressive treatment should be depends on the performance status of the patient, added Dr. Ettinger. Late-stage cancer therapies need to be considered as options in palliative care as Ms. Jennings explained in her husband’s case that “although it didn’t extend his life, it extended the quality of his lifeFor some patients, there comes a point when aggressive treatments with virtually little chance of prolonging survival are just not worth the poor quality of life.
If curative intent is no longer the goal of treatment, tailored—not once-size-fits-all—decisions about palliative care are warranted, said Dr. Karver. Even if it is no longer possible to cure the cancer, patients should be made comfortable and their symptoms (particularly pain) should be controlled. “An astute physician can listen to the cues that the patient is giving and direct the care in that direction,” she added. Finally, Dr. Newcomer proposed that sometimes “patients may need permission to know that it is ok not to do everything they could do.”
Not only are treatment decisions individualized, even dying is a personal journey, emphasized Dr. Morosini. Some dying patients prefer to gather family members and friends for last goodbyes and final plans, whereas others prefer to continue living among normal daily events and conversations to the end. Personality traits also play a part in how a person handles facing death and dying. For instance, balancing hope with reality was a major issue mentioned by most panel members. Although reality must ultimately be accepted, it is essential to hold on to hope, echoed Ms. Jennings. Dr. Ettinger added that hope is a path that may not always be optimistic. According to Dr. Morosini, her sister even died with hope. As for Mr. Hamilton, humor and a positive attitude were invaluable in his battle with cancer. “During treatment, cancer tries to trick you into negativity. Attitude is everything,” he pronounced. “If I was going to go down, I was going to go down laughing.”
The economic realities and financial implications of aggressive treatment options, some with little evidence of efficacy, for late-stage cancer were briefly addressed by the panel. Dr. Newcomer thinks the issue centers on the fact that as the costs of cancer care continue to skyrocket, some people will no longer be able to afford medical insurance. “We have not figured out as a country how much is too much,” he added, and “even the government cannot afford to keep paying at the rates that are going today.”
Ms. Pausch also shared a personal experience showing the high cost of cancer care. One of the medications her husband took cost nearly $2,000 a week, but they ultimately found out that it would not work based on his body chemistry. Because so many cancer drugs are available, patients and their doctors must use an intelligent approach to which drugs have the best chance of being effective for each patient. Otherwise, “it is a waste of cancer time, which is a very compressed amount of time,” Ms. Pausch added.
Dr. Newcomer agreed with Ms. Pausch and believes that part of the answer lies in the NCCN Guidelines. UnitedHealthcare and other insurance companies are now basing coverage decisions based upon what is recommended in the NCCN Guidelines for a given cancer. If the cancer institutions that comprise the NCCN do not consider a certain treatment appropriate yet, coverage may be declined. “We’re not trying to keep you from getting better, but if the experts have told us that it doesn’t work, we want to work with you to find an alternative instead,” he added. The answers to the questions how much is too much and what can we actually afford are at the heart of a national conversation that must take place, concluded Dr. Newcomer.
How Does Caring for Dying Patients Affect Caregivers?
The final question posed by Mr. Donaldson to the panel was how does end-of-life care affect caregivers. Both Drs. Ettinger and Karver agreed that caring for patients at the end of life is extremely difficult emotionally but highly rewarding. “It is the hardest job in the world to be a patient,” reminded Dr. Karver, and health care professionals certainly “open up” to relationships with patients. “The appreciation of patients and their families is a very gratifying part of what we do every day,” she added. Dr. Karver concluded, however, that “there is a sense of failure when a patient dies.”
For caregivers who are not health care professionals, the emotions obviously run much deeper. Communicating with family members, especially small children, is a difficult task. Ms. Pausch shared her experience informing her children of their father’s terminal disease. “Randy and I worked with cancer counselors who told us that young children may not understand the permanence of time and may comprehend the concept of time differently,” she related. For other caregivers, the emotional toll of constant concern for a family member makes it easy to forget to take needed time for themselves. For Ms. Jennings, the transition from caregiver to wife to single woman within a short period of time was a difficult one. “I had to figure out who I was going to be on my own,” she added.