An understanding of patients' care goals in the context of a serious illness is an essential element of high-quality care, allowing clinicians to align the care provided with what is most important ...to the patient. Early discussions about goals of care are associated with better quality of life, reduced use of nonbeneficial medical care near death, enhanced goal-consistent care, positive family outcomes, and reduced costs. Existing evidence does not support the commonly held belief that communication about end-of-life issues increases patient distress. However, conversations about care goals are often conducted by physicians who do not know the patient, do not routinely address patients' nonmedical goals, and often fail to provide patients with sufficient information about prognosis to allow appropriate decisions; in addition, they tend to occur so late in the patient's illness that their impact on care processes is reduced. This article (1) reviews the evidence and describes best practices in conversations about serious illness care goals and (2) offers practical advice for clinicians and health care systems about developing a systematic approach to quality and timing of such communication to assure that each patient has a personalized serious illness care plan. Best practices in discussing goals of care include the following: sharing prognostic information, eliciting decision-making preferences, understanding fears and goals, exploring views on trade-offs and impaired function, and wishes for family involvement. Several interventions hold promise in systematizing conversations with patients about serious illness care goals: better education of physicians; systems to identify and trigger early discussions for appropriate patients; patient and family education; structured formats to guide discussions; dedicated, structured sections in the electronic health record for recording information; and continuous measurement. We conclude that communication about serious illness care goals is an intervention that should be systematically integrated into our clinical care structures and processes.
Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients' palliative and end-of-life ...care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patient-reported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population.
Every one of us will die, and the processes we go through will be our own - unique to our own experiences and life stories. End-of-Life Care and Pragmatic Decision Making provides a pragmatic ...philosophical framework based on a radically empirical attitude toward life and death. D. Micah Hester takes seriously the complexities of experiences and argues that when making end-of-life decisions, healthcare providers ought to pay close attention to the narratives of patients and the communities they inhabit so that their dying processes embody their life stories. He discusses three types of end-of-life patient populations - adults with decision-making capacity, adults without capacity, and children (with a strong focus on infants) - to show the implications of pragmatic empiricism and the scope of decision making at the end of life for different types of patients.
Seriously ill hospitalized patients have identified communication and decision making about goals of care as high priorities for quality improvement in end-of-life care. Interventions to improve care ...are more likely to succeed if tailored to existing barriers.
To determine, from the perspective of hospital-based clinicians, (1) barriers impeding communication and decision making about goals of care with seriously ill hospitalized patients and their families and (2) their own willingness and the acceptability for other clinicians to engage in this process.
Multicenter survey of medical teaching units of nurses, internal medicine residents, and staff physicians from participating units at 13 university-based hospitals from 5 Canadian provinces.
Importance of 21 barriers to goals of care discussions rated on a 7-point scale (1 = extremely unimportant; 7 = extremely important).
Between September 2012 and March 2013, questionnaires were returned by 1256 of 1617 eligible clinicians, for an overall response rate of 77.7% (512 of 646 nurses 79.3%, 484 of 634 residents 76.3%, 260 of 337 staff physicians 77.2%). The following family member-related and patient-related factors were consistently identified by all 3 clinician groups as the most important barriers to goals of care discussions: family members' or patients' difficulty accepting a poor prognosis (mean SD score, 5.8 1.2 and 5.6 1.3, respectively), family members' or patients' difficulty understanding the limitations and complications of life-sustaining treatments (5.8 1.2 for both groups), disagreement among family members about goals of care (5.8 1.2), and patients' incapacity to make goals of care decisions (5.6 1.2). Clinicians perceived their own skills and system factors as less important barriers. Participants viewed it as acceptable for all clinician groups to engage in goals of care discussions-including a role for advance practice nurses, nurses, and social workers to initiate goals of care discussions and be a decision coach.
Hospital-based clinicians perceive family member-related and patient-related factors as the most important barriers to goals of care discussions. All health care professionals were viewed as playing important roles in addressing goals of care. These findings can inform the design of future interventions to improve communication and decision making about goals of care.
A recent Centers for Disease Control and Prevention report found that more persons die at home. This has been cited as evidence that persons dying in the United States are using more supportive care.
...To describe changes in site of death, place of care, and health care transitions between 2000, 2005, and 2009.
Retrospective cohort study of a random 20% sample of fee-for-service Medicare beneficiaries, aged 66 years and older, who died in 2000 (n = 270,202), 2005 (n = 291,819), or 2009 (n = 286,282). A multivariable regression model examined outcomes in 2000 and 2009 after adjustment for sociodemographic characteristics. Based on billing data, patients were classified as having a medical diagnosis of cancer, chronic obstructive pulmonary disease, or dementia in the last 180 days of life.
Site of death, place of care, rates of health care transitions, and potentially burdensome transitions (eg, health care transitions in the last 3 days of life).
Our random 20% sample included 848,303 fee-for-service Medicare decedents (mean age, 82.3 years; 57.9% female, 88.1% white). Comparing 2000, 2005, and 2009, the proportion of deaths in acute care hospitals decreased from 32.6% (95% CI, 32.4%-32.8%) to 26.9% (95% CI, 26.7%-27.1%) to 24.6% (95% CI, 24.5%-24.8%), respectively. However, intensive care unit (ICU) use in the last month of life increased from 24.3% (95% CI, 24.1%-24.5%) to 26.3% (95% CI, 26.1%-26.5%) to 29.2% (95% CI, 29.0%-29.3%). (Test of trend P value was <.001 for each variable.) Hospice use at the time of death increased from 21.6% (95% CI, 21.4%-21.7%) to 32.3% (95% CI, 32.1%-32.5%) to 42.2% (95% CI, 42.0%-42.4%), with 28.4% (95% CI, 27.9%-28.5%) using a hospice for 3 days or less in 2009. Of these late hospice referrals, 40.3% (95% CI, 39.7%-40.8%) were preceded by hospitalization with an ICU stay. The mean number of health care transitions in the last 90 days of life increased from 2.1 (interquartile range IQR, 0-3.0) to 2.8 (IQR, 1.0-4.0) to 3.1 per decedent (IQR, 1.0-5.0). The percentage of patients experiencing transitions in the last 3 days of life increased from 10.3% (95% CI, 10.1%-10.4%) to 12.4% (95% CI, 12.3%-2.5%) to 14.2% (95% CI, 14.0%-14.3%).
Among Medicare beneficiaries who died in 2009 and 2005 compared with 2000, a lower proportion died in an acute care hospital, although both ICU use and the rate of health care transitions increased in the last month of life.
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