Jennifer W. Mack

Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study

PURPOSE National guidelines recommend that discussions about end-of-life (EOL) care planning happen early for patients with incurable cancer. We do not know whether earlier EOL discussions lead to less aggressive care near death. We sought to evaluate the extent to which EOL discussion characteristics, such as timing, involved providers, and location, are associated with the aggressiveness of care received near death. PATIENTS AND METHODS We studied 1,231 patients with stage IV lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance Consortium, a population- and health system-based prospective cohort study, who died during the 15-month study period but survived at least 1 month. Our main outcome measure was the aggressiveness of EOL care received. RESULTS Nearly half of patients received at least one marker of aggressive EOL care, including chemotherapy in the last 14 days of life (16%), intensive care unit care in the last 30 days of life (9%), and acute hospital-based care in the last 30 days of life (40%). Patients who had EOL discussions with their physicians before the last 30 days of life were less likely to receive aggressive measures at EOL, including chemotherapy (P = .003), acute care (P < .001), or any aggressive care (P < .001). Such patients were also more likely to receive hospice care (P < .001) and to have hospice initiated earlier (P < .001). CONCLUSION Early EOL discussions are prospectively associated with less aggressive care and greater use of hospice at EOL.

End-of-Life Care Discussions Among Patients With Advanced Cancer: A Cohort Study

BACKGROUND National guidelines recommend that physicians discuss end-of-life (EOL) care planning with patients with cancer whose life expectancy is less than 1 year. OBJECTIVE To evaluate the incidence of EOL care discussions for patients with stage IV lung or colorectal cancer and where, when, and with whom these discussions take place. DESIGN Prospective cohort study of patients diagnosed with lung or colorectal cancer from 2003 to 2005. SETTING Participants lived in Northern California, Los Angeles County, North Carolina, Iowa, or Alabama or received care in 1 of 5 large HMOs or 1 of 15 Veterans Health Administration sites. PATIENTS 2155 patients with stage IV lung or colorectal cancer. MEASUREMENTS End-of-life care discussions reported in patient and surrogate interviews or documented in medical records through 15 months after diagnosis. RESULTS 73% of patients had EOL care discussions identified by at least 1 source. Among the 1470 patients who died during follow-up, 87% had EOL care discussions, compared with 41% of the 685 patients who were alive at the end of follow-up. Of the 1081 first EOL care discussions documented in records, 55% occurred in the hospital. Oncologists documented EOL care discussions with only 27% of their patients. Among 959 patients with documented EOL care discussions who died during follow-up, discussions took place a median of 33 days before death. LIMITATIONS The depth and quality of EOL care discussions was not evaluated. Much of the information about discussions came from surrogates of patients who died before baseline interviews could be obtained. CONCLUSION Although most patients with stage IV lung or colorectal cancer discuss EOL care planning with physicians before death, many discussions occur during acute hospital care, with providers other than oncologists, and late in the course of illness. PRIMARY FUNDING SOURCE National Cancer Institute and Department of Veterans Affairs.

Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis.

Purpose of review Pediatric palliative care, with its emphasis on symptom management and quality of life, is an important aspect of care of children with life-threatening illnesses. We review recent publications with implications for care of these children. Recent findings Invasive and life-sustaining measures continue to be part of care for many children with life-threatening illnesses, even at the end of life. While these measures may seem reasonable when recovery is possible, they may not fit with a familys preferences for end-of-life care. One possible cause of the prevalence of invasive measures in children at the end of life is that complex illness trajectories in children make it difficult to predict the timing of death. Inadequate communication by clinicians can also lead to poor preparation for the end-of-life period. Early integration of palliative care allows for improved symptom management, parental adjustment, and preparation for the end-of-life care period. Families who have the opportunity to prepare for the end-of-life period, including learning what to expect, are more likely to feel that their care has been of high quality. Bereaved parents also recognize the value of talking about death with their children. Summary Early integration of palliative care can allow children and families to make decisions about care that fit with their values, and should become a standard of care for all children with life-threatening illnesses.

Reasons Why Physicians Do Not Have Discussions About Poor Prognosis, Why It Matters, and What Can Be Improved

At a time of controversy about a sick and aging population and fiscal constraint, honest communication about choices and outcomes represents an important solution. Yet evidence consistently shows that doctors are hesitant to divulge prognostic information. We have found several underlying misconceptions held by health care professionals. Much of this work has been done in the cancer population but applies across serious illnesses.

Measuring therapeutic alliance between oncologists and patients with advanced cancer: the Human Connection Scale.

Patients consider their human connection with a physician an important aspect of end‐of‐life (EOL) care. In this study, the authors sought to develop and validate a measure of therapeutic alliance between patients with advanced cancer and their physicians and to evaluate the effects of therapeutic alliance on EOL experiences and care.

Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) : Validation of a Scale to Assess Acceptance and Struggle With Terminal Illness

The role of emotional acceptance of a terminal illness in end‐of‐life (EOL) care is not known. The authors developed a measure of peaceful acceptance at the EOL, and evaluated the role of peaceful acceptance in EOL decision‐making and care.

The Day One Talk

For the family of a child with cancer, the time of diagnosis is a time of emotional anguish. The formal discussion about the diagnosis and intended treatment frequently comes after a period of uncertainty. During this period, families are often acutely aware that cancer is the likely diagnosis, but the type of cancer, expected treatment, and likely outcome are initially unclear even to the physician. In addition, the child must often go through a series of uncomfortable tests and procedures. When the pediatric oncologist finally discusses the diagnosis and treatment with the family, fear about the news to come, combined with uncertainty, has created an anxiety that is difficult for the family to endure. Because cancer in children is rare, few physicians will find themselves in the position we just described. But every physician will at times need to deliver bad news to patients, and the principles that apply to our specific scenario may be generalized to the care of other patients with serious illnesses. Previous reports have indicated that the initial communication of bad news can negatively [1-4] or positively [5] affect adjustment to the diagnosis. Recurrent themes in the literature include the need for a quiet and private physical setting [4-7], the importance of accurate information [3,4,8,9], the need for clear communication without either overly technical language or euphemisms [10], and the importance of letting the patient’s or family’s reaction guide the flow of conversation [5]. Families frequently note the physician’s own emotional response [10,11] as one helpful aspect of the conversation that allowed for a sense of connection with the physician. Beyond the impact of communication on coping and adjustment, the patients’ understanding of their prognosis affects their choices for therapy [12], underscoring the need for physicians to communicate information about the natural history of the disease effectively and honestly. Similarly, in studies using hypothetical scenarios, patients’ understanding of the burden of treatment and the likely outcome of treatment influenced their choices about therapies [13]. Yet even when the physician communicates with accuracy and compassion, the stress of receiving bad news may prevent a patient or family member from retaining information. For example, one third of parents of children with newly diagnosed cystic fibrosis felt they had understood and retained less than half of what their doctor told them [14]. These findings suggest that one essential aspect of delivering bad news is ensuring that the exchange of information among the patient, family, and physician will continue as the shock of the initial diagnosis fades. Despite the importance of communication to the daily life of a physician, standards for education in this area have only recently started to emerge for medical students, with fewer established standards in residency and fellowship training [15]. Nevertheless, medical students and attending physicians alike can benefit from training in this area [16,17]. Although others [6,9,18,19] have reported on their personal approaches to delivering bad news, few guidelines exist for pediatricians or offer guidance about communicating with whole families. Here, we offer one method of delivering bad news to parents of children with cancer in hopes that our approach may be helpful to others and From the Department of Pediatric Oncology, Dana-Farber Cancer Institute; the Division of Pediatric Hematology/ Oncology Children’s Hospital; and the Department of Pediatrics, Harvard Medical School, Boston, MA.

Communicating About Prognosis: Ethical Responsibilities of Pediatricians and Parents

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life. In addition, despite understandable clinician concerns about its emotional impact, prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child’s illness. Children, too, may need to understand what is ahead to manage uncertainty and make plans for the ways their remaining life will be lived. In this article, we describe the ethical issues involved in disclosure of prognostic information to parents and children with life-threatening illness and offer practical guidance for these conversations.

Underuse of Hospice Care by Medicaid-Insured Patients With Stage IV Lung Cancer in New York and California

PURPOSE Medicare patients with advanced cancer have low rates of hospice use. We sought to evaluate hospice use among patients in Medicaid, which insures younger and indigent patients, relative to those in Medicare. PATIENTS AND METHODS Using linked patient-level data from California (CA) and New York (NY) state cancer registries, state Medicaid programs, NY Medicare, and CA Surveillance, Epidemiology, and End Results-Medicare data, we identified 4,797 CA Medicaid patients and 4,001 NY Medicaid patients ages 21 to 64 years, as well as 27,416 CA Medicare patients and 16,496 NY Medicare patients ages ≥ 65 years who were diagnosed with stage IV lung cancer between 2002 and 2006. We evaluated hospice use, timing of enrollment, and location of death (inpatient hospice; long-term care facility or skilled nursing facility; acute care facility; home with hospice; or home without hospice). We used multiple logistic regressions to evaluate clinical and sociodemographic factors associated with hospice use. RESULTS Although 53% (CA) and 44% (NY) of Medicare patients ages ≥ 65 years used hospice, fewer than one third of Medicaid-insured patients ages 21 to 64 years enrolled in hospice after a diagnosis of stage IV lung cancer (CA, 32%; NY, 24%). A minority of Medicaid patient deaths (CA, 19%; NY, 14%) occurred at home with hospice. Most Medicaid patient deaths were either in acute-care facilities (CA, 28%; NY, 36%) or at home without hospice (CA, 39%; NY, 41%). Patient race/ethnicity was not associated with hospice use among Medicaid patients. CONCLUSION Given low rates of hospice use among Medicaid enrollees and considerable evidence of suffering at the end of life, opportunities to improve palliative care delivery should be prioritized.

Patient beliefs that chemotherapy may be curative and care received at the end of life among patients with metastatic lung and colorectal cancer

Many patients with incurable cancer inaccurately believe that chemotherapy may cure them. Little is known about how such beliefs affect choices for care at the end of life. This study assessed whether patients with advanced cancer who believed that chemotherapy might offer a cure were more likely to receive chemotherapy in the last month of life and less likely to enroll in hospice care before death.