At the simplest level, a patient should know if he has an incurable disease, and the conversation should be done in a kind but honest manner.
—George Sledge, M
Dying patients with cancer who avoided hospitalizations and life-prolonging measures, who worried less, prayed or meditated, were visited by a pastor, and maintained a therapeutic alliance with their oncologist had the highest quality of life at the end of life, according to a study recently published in Archives of Internal Medicine.1 Called Coping With Cancer, the multisite prospective study followed nearly 400 patients with advanced cancer from the time of enrollment until their death about 4 months later to identify factors that promoted a higher quality of life in their remaining weeks of life.
Patients were asked a series of questions about their sociodemographic characteristics such as age, sex, race, ethnicity, and religious faith; their physical and psychological status; treatment preferences; and support structures. After the patient’s death, caregivers were interviewed about the types of care received in the last week of life, the location of the patient’s death, and any physical and psychological distress the patient suffered during the last week of life.
Nine factors were identified as explaining the most variance in patients’ quality of life at the end of life. The main factors that contributed negatively to the patients’ final week of life included admittance into the intensive care unit, placement of a feeding tube, and the administration of chemotherapy. The mean age of the study participants was 58.7 years; most were white, belonged to a Christian religion, and had health insurance. Younger patients had a worse quality of life at the end than older patients in the study.
Previous Coping With Cancer studies—as well as other investigations—have examined patients’ quality of life at the end of life. This new research, however, is the first to examine predictors of quality of life in the patient’s last week of life. Moreover, it is thought to be the first to simultaneously examine the vast array of experiences dying patients with cancer face, from their medical care to the social and spiritual support they receive, to determine those predictive factors.
“We really know very little about what the most important factors are that influence a patient’s quality of life in their final days. And this study was an attempt to understand the factors that most contribute to it,” said Holly Prigerson, PhD, Associate Professor, Department of Psychiatry, Harvard Medical School; Director of Psychosocial Epidemiology and Outcomes Research at Dana-Farber Cancer Institute; and principal investigator of the NCI-funded Coping With Cancer study. “Surprisingly, after you factor in all of the aggressive care that is negatively associated with quality of life, the positive factors included psychospiritual aspects—being visited by a pastor in the hospital or clinic—and maintaining human connections, particularly with oncologists.”
Another revealing finding, said Dr. Prigerson, was the impact that worry and anxiety had on the quality of life of dying patients, which also influenced how well the caregivers coped. “How worried the patients were when they entered the study predicted how worried they felt much later on. We also found that the caregivers who met the criteria for generalized anxiety disorder were associated with patients who had a worse quality of life at the end,” said Dr. Prigerson.
Maintaining the Oncologist–Patient Connection
The study findings, according to Dr. Prigerson, may help physicians, patients, and family members focus on what matters most to ensure a high quality of life at the end of life. “The results suggest the benefits that patients reap when oncologists attend to patient worries and fears. The clinical implications of the study highlight the need to incorporate psychosocial support into the care of patients with advanced cancer.”
Having oncologists maintain a connection with their patients after they leave active therapy and are transferred into hospice care can also help dying patients have a more peaceful end, according to the study results. “Therapeutic alliance matters tremendously to the quality of life of dying patients. Oncologists often tell me that there is little they can do for patients who are that far along in their illness, but these results suggest that that’s not the case, and that patients want the sense that they still matter to their oncologist and that they will work together to the very end. It’s somewhat surprisingly one of the most important influences on outcomes of care at the end of life,” said Dr. Prigerson.
“In another report that we are finalizing, one of the most important predictors of whether adolescent and young adult patients with advanced cancer want to kill themselves or not is their therapeutic alliance with their oncologist, rather than their relationship with their psychiatrist or family member,” she added.
“I think it’s very easy for patients to feel abandoned if their doctor, who has been taking care of them for 2 or 3 years, no longer talks to them once they’ve been referred to palliative or hospice care,” said George Sledge, MD, Ballvé-Lantero Professor of Oncology at Indiana University at Indianapolis and Past President of ASCO. “It is a difficult issue for busy physicians, of course, who have to go on to take care of the next 25 patients they have waiting in their office that day.”
Initiating End-of-life Discussions
The importance of effective communication between the oncologist and the patient with advanced cancer was evaluated in prior reports of the Coping With Cancer study. Those results highlighted that patients who discussed with their oncologists the care that they would want to receive if they were dying did not have significantly higher rates of depression or anxiety than those who avoided those discussions. Moreover, patients who discussed end-of-life matters with their physicians were more likely to engage in advance care planning, die receiving less intensive care, and were more likely to enroll in hospice. According to Dr. Prigerson, the study findings from the present report extend these results to suggest that when an oncologist invites and answers the dying patient’s questions and concerns, this has the capacity to improve the patient’s quality of life.
To help oncologists’ initiate candid discussions with these patients, last year ASCO issued a set of recommendations to reduce barriers to such conversations. Included among the recommendations are making quality of life an explicit priority throughout the course of advanced cancer care; helping patients fully understand their prognosis; discussing the potential risks and benefits of available cancer treatments; and when active treatment is no longer likely to extend survival, raising palliative care as a concurrent or alternative therapy. According to ASCO, conversations along these lines currently happen with fewer than 40% of patients with advanced cancer.
“At the simplest level, a patient should know if he has an incurable disease, and the conversation should be done in a kind but honest manner,” said Dr. Sledge. “But it’s a very uncomfortable conversation to have with your patients. There are some physicians who avoid having these discussions, and there are some patients who don’t want to have that discussion as well.”
To help patients with advanced cancer broach the subject of their end-of-life care with their physicians, ASCO also released a guide to Advanced Cancer Care Planning (www.cancer.net), which includes information on treatment options; palliative and hospice care; steps to take to finalize legal, financial, and business affairs; and how to find religious and spiritual support.
Integrating Palliative Care into Standard Oncology Care
A phase III study of patients with metastatic non–small cell lung cancer (NSCLC) showed strong evidence of a survival benefit when palliative care is offered along with standard therapy at initial diagnosis.2 Based on these findings, ASCO published a provisional clinical opinion (PCO) earlier this year in the Journal of Clinical Oncology to encourage integration of palliative care services into standard oncology practice at the time a person is diagnosed with any type of metastatic cancer.3 According to the PCO, the goal of palliative care is to provide “patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis … and improve quality of life for both the patient and the family.”
“I don’t think there is anything special about NSCLC in terms of the survival findings in the study,” said Dr. Sledge. “If there is a survival benefit in NSCLC, it is likely to be true in other cancers as well. It’s ethically appropriate for all patients to have their symptoms palliated and, therefore, it is an important part of the oncologist’s training. ASCO has recognized that for a long time.”
Because end-of-life care discussions are so difficult for physicians, said Dr. Sledge, ASCO’s PCO and its recommendations for improving communication with patients gives oncologists tools to individualize care and improve patients’ quality of life throughout the course of their illness. ■
Disclosure: Dr. Sledge reported no potential conflicts of interest.
1. Zhang B, Nilsson ME, Prigerson HG: Factors important to patients’ quality of life at the end of life. Arch Intern Med. July 9, 2012 (early release online).
2. Temel JS, Greer JA, Muzikansky A, et al: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733-742, 2010.
3. Smith TJ, Temin S, Alesi ER, et al: American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care. J Clin Oncol. February 6, 2012 (early release online).