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The Family Evaluation of Hospice Services was used to document bereaved family members' perceptions of whether their loved ones were referred too late to hospice and to examine the association of that perception and quality of end-of-life care. A mortality follow-back survey of bereaved family members from two not-for-profit hospices found that 13.7% of decedents were referred at a time too late for hospice services. Family members of persons referred too late reported lower satisfaction with hospice services, a higher rate of unmet needs for information about what to expect at time of death, lower confidence in participating in patient care at home, more concerns with coordination of care, and lower overall satisfaction. Families reported physicians as an important barrier to earlier hospice referral in nearly one-half of cases. These results indicate a need for improved services for shorter-stay hospice patients/families and for physicians to help facilitate earlier hospice admission.

The benefits of shared decision-making (SDM) in health care delivery are well documented, but implementing SDM at the institutional level is challenging, particularly when patients have complex illnesses and care needs, as in cancer. Denmark's Lillebaelt Hospital, in creating The Patient's Cancer Hospital in Vejle, has learned key lessons in implementing SDM so that the organization's culture is actually being transformed. In short, SDM is becoming part of the fabric of care, not a mere add-on to it. Specifically, the hospital chose and structured its leadership to ensure that SDM is constantly championed. It organized multiple demonstration projects focused on use of decision aids, patient-reported outcome measures, and better communication tools and practices. It designed programs to train clinicians in the art of doctor-patient communication. It used research evidence to inform development of the decision aids that its clinicians use with their patients. And it rigorously measured SDM performance in an ongoing fashion so that progress could be tracked and refined to ensure continuous improvement. Initial data on the institution's SDM initiatives from the Danish national annual survey of patients' experiences show substantial progress, thereby motivating Lillebaelt to reassert its commitment to the effort, to share what it has learned, and to invite dialogue among all cancer care organizations as they seek to fully integrate SDM in daily clinical practice.

The AIM program was successful at increasing hospice utilization through a targeted intervention focused on palliative and end-of-life care, increased patient education and decision making, and a dynamic treatment approach. The finding of increased utilization by African Americans, a population traditionally reluctant to use hospice, was particularly noteworthy.

This paper provides an evidence-based review of the principles underlying palliative care for heart failure (HF), including its pathogenesis, staging, assessment, prognosis, and treatment. Approaches to advanced care planning, symptom management, hospice eligibility, home inotropic infusions, device management and improving the continuum of care in HF are discussed. The reader will be able to recognize advanced HF, use important elements of physical assessment, utilize Web-based prognostic and risk-stratification models, facilitate advance care planning, ensure optimal treatment, manage common symptoms and comorbid conditions, determine hospice eligibility, and consider issues related to withholding or withdrawal of inotropic infusions and devices used in HF refractory to standard treatment. The ultimate goal of palliative care for heart failure is to integrate knowledge of treatment advances and comfort measures and to provide them concurrently in a seamless continuum to patients with late-stage disease.