Palliative care delivery in the home
- Martha L Twaddle, MD, FACP, FAAHPM
Martha L Twaddle, MD, FACP, FAAHPM
- Associate Professor of Medicine
- Northwestern University Feinberg School of Medicine
- Elizabeth McCormick, MD
Elizabeth McCormick, MD
- Assistant Professor of Geriatrics and Palliative Medicine
- Mount Sinai School of Medicine
- Section Editors
- Christine Ritchie, MD, MSPH
Christine Ritchie, MD, MSPH
- Section Editor — Special Sites of Care and Allied Health Professions
- Professor of Medicine
- Harris Fishbon Distinguished Professor for Clinical Translational Research in Aging
- University of California - San Francisco
- Maria J Silveira, MD, MA, MPH
Maria J Silveira, MD, MA, MPH
- Section Editor — Special Sites of Care and Allied Health Professions
- Clinician Scientist
- Ann Arbor VAMC
- Associate Professor of Internal Medicine
- University of Michigan
Patients who benefit from home-based palliative care are typically those with advanced complex illnesses or life-limiting diagnoses and a high risk of morbidity and mortality. These individuals most often do not have a predictable prognosis and are not eligible for or interested in electing formal hospice services [1-3]. These patients are among an increasing number of elderly and frail persons who are homebound, usually due to the presence of multiple chronic illnesses including cognitive impairment with resultant functional limitations and decline. In 2011, approximately two million people or 5.6 percent of the elderly Medicare population living in the community were completely or mostly homebound . The majority of these patients experience significant symptoms associated with their advanced diseases, in particular, pain and depression. More than 50 percent of these people prefer to be cared for in the home setting, expressing this preference particularly when asked about end of life care .
Palliative care is an approach to care for any patient diagnosed with a serious illness that is delivered by an interdisciplinary team of health professionals. Palliative care team members manage pain and other physical symptoms, facilitate communication, assist with decision-making, and coordinate care across settings throughout the disease trajectory . Palliative care support is relevant to a broad range of diagnoses for patients of all ages, including those living with serious medical conditions that adversely affect daily functioning or will lead to a reduction in life expectancy [7,8]. (See "Benefits, services, and models of subspecialty palliative care".)
In circumstances of advanced illness and the end of life, the effort to move to other settings for evaluation and treatment may not be in line with the patient’s preferences or best interests. Palliative care provided in the home setting is associated with a reduction in symptom burden and increase in patient and caregiver satisfaction; in addition, studies in the United States and elsewhere also show that it results in decreased utilization of resources and costs [9-13]. One study published in 2014 showed that patients with terminal cancer who received palliative home-care services were more likely to die at home, and during the last two months of their lives were less likely to be hospitalized and when hospitalized spent less time in the hospital . Furthermore, adults who receive home-based palliative care are more likely to have an advance care directive and discussions about goals of care . (See "Advance care planning and advance directives".)
This topic will discuss the delivery of palliative care in the home, including a review of the different models of home-based palliative care and an outline of the specific components of a home visit. Other aspects of palliative care are discussed separately. (See "Benefits, services, and models of subspecialty palliative care" and "Overview of comprehensive patient assessment in palliative care" and "Approach to symptom assessment in palliative care".)
Palliative care delivered in the home is ideal for patients who are “homebound” . There are no universal criteria to define what makes a patient homebound. In the United States (US), reasonable criteria have been set by the Medicare homebound rule. These apply to patients with a serious illness and those who have experienced a serious injury. In order to qualify as homebound, such persons:
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- MODELS FOR PALLIATIVE CARE IN THE HOME
- Home-based primary and palliative care
- Home health-based model
- Hospice model
- Bridge programs
- Palliative care consultative model
- THE HOME VISIT
- Before the visit
- During the visit
- Advance care planning
- Staff safety
- COMMUNICATION AND CARE COORDINATION
- ROLE OF CAREGIVERS
- Burden of caregiving
- US COVERAGE FOR HOME-BASED PALLIATIVE CARE
- INITIATING REFERRAL
- DEATH IN THE HOME
- SUMMARY AND RECOMMENDATIONS