INTRODUCTION — Subspecialty palliative care is an interdisciplinary medical specialty that has been demonstrated to benefit patients living with a serious illness. This care is appropriate for patients regardless of age or diagnosis [1,2]. Palliative care focuses on the assessment and management of symptoms, support of caregiver needs, and coordination of care, attending to the physical, functional, psychological, practical, and spiritual consequences of serious illness. Palliative care assessments include the caregiver’s capacity to provide care, along with any signs and/or symptoms of caregiver distress [1,2]. By definition, palliative care is provided by an interdisciplinary team. Palliative care may be delivered by palliative care specialists, who work in an integrated approach with a patient’s primary care clinicians and other treating specialists. However, palliative care principles and practices can be integrated and delivered by any clinician caring for the seriously ill in any setting (sometimes called “primary palliative care”) . (See "Benefits, services, and models of subspecialty palliative care" and "Primary palliative care".)
In the United States, most subspecialty palliative care is delivered in hospitals and, increasingly, in outpatient clinics. However, in circumstances of advanced illness, especially at the end of life, inpatient and ambulatory outpatient settings for palliative care may not be in line with the patient’s preferences or best interests. In addition, patients with advanced illness may have difficulty accessing outpatient care due to functional limitations and symptom burden.
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 "Primary palliative care" and "Overview of comprehensive patient assessment in palliative care" and "Approach to symptom assessment in palliative care".)
EVIDENCE OF BENEFIT FOR HOME-BASED PALLIATIVE CARE — Palliative care provided in the home setting is associated with a reduction in symptom burden and increases in patient and caregiver satisfaction; in addition, studies in the United States and elsewhere also show that it results in decreased utilization of health care resources and costs [4-7]. In one study conducted in Italy, patients with terminal cancer who received palliative home care services were more likely to die at home, were less likely to be hospitalized during the last two months of their lives, 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".)
A systematic Cochrane review of home-based palliative care included 23 studies, 16 of which were randomized controlled trials, six of which were identified as “high-quality” . Most patients had advanced cancer, but they also had heart failure, chronic obstructive pulmonary disease, HIV/AIDS, and multiple sclerosis, among other conditions. The control groups were “usual care,” which mainly consisted of home nursing and nursing home care without specialist palliative care provision. Home-based palliative care increased the chance of patients dying at home (odds ratio [OR] 2.21, 95% CI 1.31-3.71) and had a small but significant beneficial effect on symptom burden; the data on cost savings overall were inconclusive. Additional research on the impact of home-based palliative care on patient care, caregiver experience, utilization, and cost is needed.
INDICATIONS — 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 [8-10]. These patients are among an increasing number of older adult and frail persons who are homebound, usually due to the presence of multiple chronic illnesses including cognitive impairment, with the resultant functional limitations and decline. In 2011, approximately two million people or 5.6 percent of the older adult Medicare population living in the community were completely homebound, and an additional 1.5 million were partially so, requiring assistance to leave their homes . The majority of these patients experience significant symptoms associated with their advanced diseases, in particular pain and depression. Furthermore, more than 50 percent of these individuals prefer to be cared for in the home setting, expressing this preference particularly when asked about end-of-life 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, reasonable criteria have been set by the Medicare homebound rule for the purpose of providing home health services. These apply to patients with a serious illness and those who have experienced a serious injury. In order to qualify as homebound, such persons:
●Need the aide of supportive devices (eg, crutch, cane, wheelchair, walker, or special transportation) or
●Require the assistance of another person in order to leave their place of residence or
●Have a condition that renders leaving their home medically contraindicated
In addition, patients should be unable to leave the home normally such that attempts to do so would require a considerable and taxing effort.
It is important to note that at least in the United States, most patients receiving home-based palliative care do so under a medical practice model and are not required to meet the above definitions of being homebound as it applies to home health, particularly if the clinician determines it is medically necessary to see a patient in the home setting to optimize their assessment and treatment plan. However, documentation of the need for home-based care is typically recommended and may be required for insurance coverage.
MODELS FOR PALLIATIVE CARE IN THE HOME — In the United States, there are several models for the provision of home-based palliative care services, including the following :
●Primary and palliative care, in which the primary care clinician functions within an interdisciplinary practice model that is also providing palliative care services
●Home health-based model, which relies on the home health infrastructure to serve the seriously ill population at home
●Hospice-based and hospice-affiliated models
●Home-based palliative care managed care programs that target and manage at-risk populations of patients with serious illness in the home
●Combinations of the various models
These models utilize and integrate different approaches to meet the palliative care needs of seriously ill patients and their caregivers, including direct patient care, consultative management, or comanagement:
●Consultative management is when the interdisciplinary specialty palliative care team provides consultative services to address specific issues and the direct care is provided by others.
●Comanagement is when palliative care interdisciplinary team members actively collaborate in the comanagement of the patient with other treating clinicians and health care teams, such as oncologists, cardiologists, or primary care clinicians.
●In some cases, the palliative care team may assume all of the patient’s care for a designated period of time, typically after hospitalization and often prior to referral to hospice.
These models of home-based palliative care services may be facilitated in a number of ways :
●As an extension of a geriatrics or primary care practice, such as a Patient-Centered Medical Home (primary and palliative care), providing consultation, comanagement, or primary and palliative care.
●Provided via home care agencies, such as home health or hospice.
●As an extension of a hospital-based palliative care program, often as part of a health system medical group.
●As a palliative care practice that contracts to serve a defined population of seriously ill patients, typically through direct-payer contracting using value-based advance payment models.
Many factors determine the type of palliative care services that can be available in a patient’s community, including the following:
●Resource limitations in terms of specialty-trained palliative care clinicians
●Constraints and resources of the local health system
●Local coverage for services (including insurance and other payers)
●Financial resources of patients in the catchment area
The individual models for home-based palliative care delivery are discussed in more detail in the following sections.
Home-based primary and palliative care model — This is the most robust of the home-based palliative care delivery models. Home-based primary and palliative care (HbPPC) programs integrate palliative care into comprehensive and longitudinal primary care through an interdisciplinary team. Patients enrolled in these programs are typically patients with multiple chronic medical conditions associated with functional impairment, high symptom burden, and/or complex care coordination needs. For these patients, the bundling of primary care with specialty-level palliative care can be particularly advantageous because it affords the integration of palliative care principles into longitudinal health care relationships and can reduce the symptom burdens of patients . Many of these patients continue to see their primary care clinicians and treating specialists in office settings but require additional regular home visits by health professionals to promote adherence to complex care plans.
HbPPC programs may be extensions of private primary care practices or primary care within a medical group, such as within academic medical centers, community-based organizations, or hospital-based health systems (eg, a Veterans Affairs Medical Center). These teams are most often led by a physician or advance practice provider and can include nurses, clinical pharmacists, social workers, psychologists, physical and other types of therapists, and community health workers and other care coordinators. Whenever possible, team members have added expertise and certification in palliative care to allow them to provide subspecialty-level palliative care services in the home. In the setting of HbPPC, access to subspecialty palliative care support has been demonstrated to improve quality of life for patients and their caregivers, lower the burden of home care for the caregiver, improve symptom management, and decrease unnecessary hospital and emergency department utilization [8,16].
HbPPC programs provide home visits during business hours, and most provide 24-hour and weekend phone and/or visit availability. In addition, some programs deliver medications to the home (much like hospice) and, in addition to longitudinal primary care, provide urgent and transitional care.
The available data, although limited, appear to support the benefits of these programs. As an example, in one observational study, 140 patients enrolled in an HbPPC program were followed using telephone-based surveys to assess symptom burden . Patients reported significant reductions in symptoms (including pain, anxiety, depression, fatigue, and loss of appetite) as early as three weeks following enrollment, which were maintained at 12 weeks .
Home health-based model — The home health-based model is nursing focused and relies on the infrastructure of home health to serve the seriously ill population at home. There are distinctions between traditional home health care and palliative home health care:
●Home health care is most frequently initiated in the postacute period following a hospital or skilled nursing facility stay. It is also available for patients without a preceding hospitalization if their provider has determined skilled nursing needs are present, such as with the following:
•Frequent monitoring of blood pressure, fluid status, or blood glucose
•More rigorous assessment of symptoms, including pain, dyspnea, constipation
•Management of complex wounds
•Reinforcement of patient/caregiver education around therapies (eg, home glucose monitoring and insulin self-administration)
•Assessment of medication adherence and barriers
•Physical, occupational, and speech therapies
The main goal of traditional home health care is rehabilitation. As a result, most United States agencies do not offer 24/7 support or emergent home visits, and they usually do not deliver medications to the home. In the United States, patients are eligible for home health under Part A Medicare or commercial insurance when they are homebound and require intermittent skilled nursing and/or physical, occupational, or speech therapy .
●By contrast, palliative home health care (sometimes referred to as home health-based palliative care) is typically provided by an interdisciplinary team utilizing the home health model for infrastructure and financial support. Because of its structure, it is more nursing centric, with less direct physician involvement, which is most often as a consultative service. The patient population served is seriously ill and more complex than the general home health population but may still have rehabilitative potential. Palliative home health care is not reimbursed as a separate Home Health program under the Medicare Part A Home Health benefit in the United States, and it must fulfill the same criteria as traditional home health. It is episodic rather than longitudinal because of reimbursement and regulations, which can be a disadvantage for patients who have chronic, progressive disease and ongoing needs. As of January 1, 2020, the Centers for Medicare and Medicaid Services (CMS) finalized a new patient case-mix adjustment methodology called the Patient-Driven Groupings Model (PDGM). This change is to further the efforts to shift the focus from volume of services to a more patient-driven model accounting for patient complexity. However, home health episodes of care are decreased from 60 to 30 days which may impact further longitudinal needs and require more frequent recertifications for continued care.
An advantage of home health services is that they often combine rehabilitation with the competencies of palliative care to alleviate distressing symptoms, facilitate discussion around realistic goals of care, and secure documentation of advance care planning.
However, patients with advanced and/or end-stage disease may derive limited benefits from home health services as the only means of support, as care is often time-limited to a particular episode for which skilled needs have been defined. As a result, once the objectives of care are met, a patient is usually discharged without home-based professional assistance for ongoing care management. This can be a particularly vulnerable time for patients who have complex illnesses. In our experience, it is not unusual for the organization of care to deteriorate after home health care has been discontinued, which increases the stress for the caregiver and may prompt rehospitalization or use of the emergency department.
Home health services are often utilized to augment HbPPC when increased care needs arise. As an example, for a patient already receiving HbPPC who has been hospitalized, home health services may be added on to provide physical therapy, to provide increased monitoring of a person’s condition, or to reinforce education and training for patients and caregivers regarding new medications or therapies. Home health may also provide home infusion of antibiotics for the home-based palliative care patient or provide wound care. Increasing the interdisciplinary team’s direct care capacity through the integration of home health may help avoid hospital and emergency department admissions for this population of seriously ill patients entirely. When the patient reaches the goals of therapy or the conclusion of the intervention, the “discharge” from home health is not disruptive, as HbPPC continues to provide longitudinal support.
Hospice and hospice-affiliated model — Hospice is an intensive, bundled form of home-based palliative care for patients whose life expectancy is typically defined in months and who are no longer benefitting from disease-directed curative interventions. In the United States, hospice care is supported by defined insurance coverage and reimbursed on a per diem basis. In the United States, patients are eligible to use hospice care when they are formally certified by two physicians as being in the terminal phases of an illness, that being a prognosis of six months or less if the disease(s) follows its normal course. Hospice care is provided by a dedicated interdisciplinary team comprised of nurses, physicians, social workers, chaplains, and home aides, all of whom have experience and knowledge caring for patients at the end of life. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Eligibility'.)
Hospice-affiliated programs — In the United States, many hospice programs have established home-based palliative care programs for patients who have an advanced serious illness but do not choose to elect the hospice benefit or do not meet hospice eligibility criteria at the time of referral. The services provided by these programs vary widely and are not regulated or standardized. Some may include a specialty-trained interdisciplinary team with clinician visits and medical management, and others may be limited to volunteer support or intermittent social work visits.
These programs can more easily facilitate a transition to hospice care when the patient is eligible and/or desirous of hospice support.
Under the Medicare Hospice Benefit, when individuals elect to use their hospice benefit, they must assign the Medicare coverage for the management of care related to their terminal diagnosis to the hospice agency, who then approves only treatments and therapies focused on symptom control. However, in 2016, the Center for Medicare and Medicaid Innovation at the Centers for Medicare and Medicaid Services implemented the Medicare Care Choices Model (MCCM), which allows Medicare beneficiaries to receive hospice services while continuing to have access to traditional Medicare services for care related to their terminal diagnosis. The MCCM project aims to improve access to hospice services and improve quality of life and patient and family satisfaction while decreasing Medicare costs . Eligible beneficiaries must have one or more of the following diagnoses: cancer, congestive heart failure, chronic obstructive pulmonary disease (COPD), or HIV/AIDS. They must be eligible for hospice care, ie, have Medicare Part A insurance and a prognosis of six months or less if the disease(es) run their typical course. The MCCM project has led to a 25 percent decrease in total Medicare expenditures, which generated USD $21.5 million in net savings between January 1, 2016 and September 30, 2019. This reduction was primarily in through reducing inpatient utilization. Beneficiaries in MCCM on average elected to access hospice care a week earlier than the control group. Satisfaction with the MCCM program was high; unfortunately, the program is limited to people in the final months of life [18,19]. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Limitations'.)
Home-based palliative care managed care services — These emerging programs provide subspecialty-level palliative care through integration with primary care or oncology practices for an identified population of seriously ill patients. Patient populations are identified based on diagnoses and utilization patterns, often using proprietary data analytics; this model of palliative care is being piloted primarily in managed care programs, such as with Medicare Advantage programs or through partnerships with commercial insurance programs. Specialty-level advanced practice professionals, social workers, and palliative care clinicians provide in-home comanagement. Patients will continue to see their treating clinicians, and their care is augmented through additional home-based services, including intermittent home health.
Palliative care consultative model — Palliative care consultations are generally offered as extensions of a growing number of hospital-based palliative care programs and community-based hospice programs. The palliative care physician or advanced practice provider provides consultation in the home and may partner with a community nursing or hospice agency to facilitate full interdisciplinary team support. There is variation in the populations served by the consultative model, as well as the way programs are structured and reimbursed. For example, palliative care may be provided to patients who were initially seen in the hospital by an inpatient palliative care service, those referred by primary care or specialists, or those identified as high risk by the hospital for readmission.
Accessing services — Identifying patients who will benefit from home-based palliative care is increasingly proactive and data driven. In the United States, insurance carriers and health care services are developing algorithms to help identify high-risk patients who might benefit from home-based palliative care based on combinations of claims data, health care utilization, and prescribed medications. Approaches include the following:
●Home-based palliative care programs may work alongside home health agencies to identify appropriate patients for palliative care services. These may include patients with end-stage conditions such as heart failure, COPD, serious neurologic conditions (eg, Parkinson disease, dementia, multiple sclerosis, amyotrophic lateral sclerosis), and end-stage cancer.
●Referral may also be triggered based on a specific diagnosis plus high health care utilization (repeated hospitalizations or emergency department visits) or issues related to medication adherence.
●Patients may also be identified by home health providers, particularly when the skilled benefit of home care is ending and patients may be particularly in need of continued home assessment, management, and support. (See 'Home health-based model' above.)
●Inpatient and ambulatory specialty palliative care programs may continue to follow patients for whom they have provided consultation or comanagement into the home setting, integrating and collaborating with other home services and treating clinicians.
THE HOME VISIT — Visiting patients in their homes affords the clinician a very different perspective on the patient’s life. Clinicians see their patients in their own environment, allowing providers to directly assess the functional status of a patient, meet family members and other caregivers, or conduct a meeting in a setting familiar and comfortable to the patient and family or caregivers. Seeing a patient within their own home provides a unique opportunity to observe the conditions in which the patient lives and who lives with them, who provides care, or who is available for support. These observations can give insight into a wide range of factors that may impact a patient’s health, including the patient’s past, their current functional status, caregiving needs, medication adherence, access to food, interpersonal dynamics, cleanliness, and safety of the home as well as safety of the neighborhood and access to pharmacies and groceries.
The provider should recognize that they are entering the private space of another at all times. Conveying respect and asking permission are especially important in the home visit. Questions such as “May I sit here?” or “Where would you like to talk first?” are essential and convey respect and attentiveness. Given the nature of seeing patients at home, patients and those who live with them may seek to create a more social atmosphere for the provider, including offering food and drink. In some cultures, this is a very important ritual and to refuse may be offensive. The provider must remain focused and alert first to the needs of the patient and goals for the visit and skillfully manage the time spent in other activities.
During the home visit, the clinician should define a specific goal or reason for the appointment to substantiate the need for the visit (medical necessity) and the reason it is occurring in the home setting. In the United States, this information helps to justify the appropriateness of billing.
Indicators for a home-based visit — There are a variety of reasons that patients may require a home visit rather than make the trip to a clinician’s office, including the following :
●Immobility, cognitive impairment, or a serious psychiatric condition.
●Request prompted by a home health team member, the patient, or the patient’s family member or caregiver.
●Importance of meeting the patient with their caregiver in order to make medical decisions.
●The opportunity to directly observe the patient in their home environment to better assess the patient’s functional abilities, the caregiver’s understanding of the complex medical issues present and ability to meet the patient’s needs, and/or to verify eligibility for services by third-party providers.
●The need to meet and collaborate with community-based providers onsite.
●To assess care coordination and transitions of care in order to reduce hospital readmissions.
Before the visit — Because of the setting, it is essential to prepare in advance for the visit. Steps to ensure that one is prepared include the following:
●Ensure that you have directions to the home, including phone numbers for the patient and caregivers. Call ahead so that the patient and caregivers are expecting you.
●Bring supplies, examples of which are listed in the table (table 1). Ensure those going into the home are comfortable with infection control best practices and have appropriate personal protective equipment .
●Review the patient’s medical records, medication list, and any existing advance directives.
●Understand the reason for referral and the home visit.
●Develop a preliminary care plan, including identification of areas that may need follow-up, review, reassessment, or reinforcement. Plan to create a more complete care plan at the end of each visit, integrating the patient’s and family member or caregiver’s direct input.
Adopting a systematic approach before the visit can help ensure that the visit will be effective and efficient and reduces the likelihood that some important aspect of assessment (eg, medication review) or care is not performed .
During the visit — A standardized checklist should be used during each visit to ensure that no areas of concern are missed. Patients and families or other caregivers require screening in all the Palliative Care Domains of Care and a more thorough assessment as indicated, as defined by the clinical practice guidelines laid out in the Clinical Practice Guidelines for Quality Palliative Care, National Consensus Project Guidelines fourth edition. These include physical symptoms; psychological, psychiatric, and cognitive symptoms; illness understanding and care preferences; social and economic needs; cultural aspects of care; religious, spiritual, and existential issues; care coordination and continuity; and caregiver capacity and/or distress. (See "Overview of comprehensive patient assessment in palliative care", section on 'Domains of palliative assessment'.)
Comprehensive screening may need to be facilitated over several visits given the complexity and prioritization of the patient and family or caregiver’s needs. For older patients, a visit to a patient’s home provides the opportunity to assess many of the components of the comprehensive geriatric assessment, which overlaps significantly with a holistic palliative care assessment. (See "Comprehensive geriatric assessment".)
For all patients, the following areas should be addressed:
●Symptom assessment – During the visit, the clinician can assess and observe for symptoms such as pain, dyspnea, nausea/vomiting, fatigue, depression, anxiety, diarrhea, and/or constipation. Where possible, symptom assessment should use validated scales, including visual analog scales, to help convey symptom severity. (See "Approach to symptom assessment in palliative care".)
●Functional assessment – Being present in the home provides the opportunity to observe the patient’s ability to complete activities of daily living and what assistive devices, formal or informal, they use about their home. For example, this may include the need for a walker, bedside commode, or other durable medical equipment.
●Physical safety – The clinician should assess for obstacles to patient movement that may increase the risk of injury including stairs, inadequate lighting, clutter, uneven surfaces, and throw rugs. For patients on oxygen, this also includes evaluation of electric cords and tubing. Based on the safety review, the clinician may make recommendations about the need for assistive devices or a hospital bed aimed at easing transfers and preventing falls. This includes evaluation of the patient’s ability to ambulate and perform activities of daily living. Finally, it includes evaluation of electric outlets to ensure that there is a low risk of overloading.
●Medication safety and storage – In addition to routine medication reconciliation, clinicians should review where patients keep their medications and how they take and dispose of them, including oral therapies and cutaneous patches. Ensure there are no medication errors, duplications, and issues with safety to others in the home, particularly children. As part of reconciliation, assessment of barriers to adherence is also important. In particular, it is important to determine how a homebound patient accesses their medications. Helpful resources for this population include pharmacy delivery services and blister packaging.
●Assessment of nutrition – This includes an evaluation of food and fluid availability and access to meals. It may include assessments of the kitchen and pantry, so the clinician can assess for food safety, storage, and freshness. This is particularly important for patients who appear to be left at home alone for long periods of time.
●Evaluation for social support – This includes checking in with caregivers regarding caregiver burden and need for support and respite, ensuring the patient has adequate home care support and noting possible evidence of neglect or abuse.
Clinicians should recognize that their entering a patient’s home can result in the patient (and others who live there) having a heightened sense of vulnerability and a fear of judgment. In our experience, acknowledging and affirming what they are doing appropriately can help ease these feelings and enhances trust and openness on both sides. Even after the death of a loved one, patients have commented on how helpful and affirming this can be.
Prior to leaving, ensure that any questions have been answered and that a follow-up evaluation is scheduled. We find it useful to facilitate teach-back to ensure that key information has been effectively shared . It is important that teach-back does not feel like a test or create shame when a person struggles with health literacy. A simple question that can give insight into retention of information in a nonthreatening way is:
●“If you were to explain to your family (caregiver, daughter, etc) what we discussed today, what would you tell them?”
Just as in an office visit with an outpatient provider, patients, families, and other caregivers appear to benefit from a verbal and written review of any recommendations or changes that were made as a result of the visit , which also lie at the heart of the United States Meaningful Use clinical quality measures . It may be worthwhile when family or caregivers cannot be present during the appointment to have them on speakerphone to review the care plan.
Although preparation and planning are key to effective and efficient visits, clinical or social changes may frequently occur between visits. The anticipated plan for the visit may suddenly change, and the clinician must be nimble in resetting goals for the home visit to best meet the needs of the patient and his or her caregiver and family.
In addition, the assessment of one provider can help to inform the goals of others on the interdisciplinary team and prompt the need for follow-up by others on the team. As an example, the caregiver expressing anxiety and fear may naturally allow the introduction of a social worker or chaplain, and the patient’s physical complaints to the social worker or expressed concerns regarding medications to the chaplain might prompt a clinician or nurse practitioner visit for further diagnosis and treatment. Such interactions are not only important but may lend more insight into the visit, no matter what the previously defined goals were. Dual visits by a physician and social worker, or by an advanced practice professional (eg, nurse practitioner) and other team member, are often very helpful, particularly when psychosocial or spiritual needs are high along with medical issues.
Advance care planning — Caring for patients at home provides a unique opportunity to establish relationships with patients and their loved ones in order to facilitate ongoing discussions around goals of care and advance directives, including documentation of a patient’s health care proxy and stated preferences around resuscitation. Once established, goals of care should be documented in the medical record. In addition, these documents should be readily available in the home. (See "Advance care planning and advance directives" and "Discussing goals of care".)
Patients or their decision-makers may have clear and stated preferences not to be resuscitated, as documented in a living will or other advance care planning document. However, it is important to ensure that a provider-signed document is completed and available in the home (eg, Do Not Resuscitate [DNR] order or Practitioner Orders for Life-Sustaining Treatment [POLST]).
Other names for POLST include the following:
●Medical Orders for Life-Sustaining Treatment (MOLST)
●Clinician Orders for Life-Sustaining Treatment (COLST)
●Medical Orders for Scope of Treatment (MOST)
●Physician Orders for Scope of Treatment (POST)
These instruments provide an opportunity for health care professionals and patients to document patient’s preference around resuscitation, medical interventions, artificial nutrition/hydration, and antibiotics as a medical order. These orders are honored by emergency medical services as well as by nursing home and hospital staff and can ensure that patients’ preferences regarding their care are followed as they transition through or are evaluated in different care sites . (See "Advance care planning and advance directives", section on 'Physician Orders for Life-Sustaining Treatment'.)
Staff safety — It is important that an evaluation of the patient’s home also addresses the clinician’s safety in the home and in the neighborhood. This is particularly important in situations when members of the interdisciplinary team feel unsafe in a neighborhood or home, particularly in the event of an urgent visit after hours. Organizations may provide security personnel to accompany the providers who have to make visits in areas where they do not feel safe, particularly after hours. Other safety precautions include scheduling visits for daytime, facilitating joint visits by team members, gaining knowledge about the community in which visits are conducted, and having a cell phone and emergency line available . If the team feels that despite taking extra precautions the visit is unsafe, plans should be made to refer the patient to the appropriate outpatient setting for care.
COMMUNICATION, CARE COORDINATION, AND COLLABORATION WITH COMMUNITY AGENCIES — Caring for a patient in the home requires addressing many medical and psychosocial needs. It is important when providing home-based palliative care to learn about and establish relationships with available community resources including home care, hospice, rehabilitative services (speech, physical/occupational therapy), mental health services, spiritual services, caregiver support services, providers of durable medical equipment, nutritional services, home infusion therapy, and community volunteer services . It also requires communication among all those involved in the patient’s care, including clinicians, formal caregivers (ie, trained and paid personnel) and informal caregivers (friends and/or family). Formal systems of communication and information sharing, and clear accountability for care coordination, are critical to avoid fragmentation and to support the vulnerable population of the home-based seriously ill.
An important component of care coordination is ensuring that all caregivers know whom to contact with questions and whom to notify in the case of an emergency or change in clinical condition. In addition to triage and crisis support, patients and caregivers benefit from frequent monitoring and check-ins.
●Ensuring patients have access to a formal triage system – The ability to respond to patients in a timely manner is important and can be achieved by a 24-hour phone triage system and availability of urgent visitation. A good triage system assists providers in promptly attending to problems that can be addressed in the home and facilitating the proper follow-up, both of which can aid in preventing unwanted or unnecessary emergency department utilization and hospitalizations.
●Coordinating care between the involved clinicians to establish one contact person – Care coordination is important, especially when palliative care providers cannot guarantee 24-hour coverage. Ensuring that providers are available to assess family or caregiver concerns and questions is essential in coordinating patient care and addressing urgent concerns.
●Active involvement and formal integration of community-based social workers, care coordinators, community health workers, visiting nurse agencies, and other home care agencies to avoid fragmentation of care. Creating access to a central electronic health record improves communication and care coordination.
●Utilization of telehealth – Remote monitoring or technology that facilitates patient and caregiver reporting as to symptom distress and wellbeing improves symptom management, efficiency, and quality .
When hospital evaluation or higher level care is needed, clear communication with emergency department and hospital teams allows for the sharing of medical history and previously established goals of care. Communication can be done through an integrated medical record (if the health care system between inpatient and outpatient services are the same), written information, or via electronic sources (eg, phone calls and/or encrypted email).
ROLE OF CAREGIVERS — Caregivers usually help with activities of daily living such as bathing, dressing, transferring, toileting, and eating, as well as instrumental activities of daily living such as grocery shopping and meal preparation. Such services can be provided informally by unpaid family members and friends, or formally by privately hired workers who are paid for out of pocket or agency-employed workers funded in the United States by private insurance, public payers, or long-term care insurance .
Individuals who provide personal assistance services in the community are referred to by different titles, including home care aides or workers, home health attendants or aides, and personal care aides. In the United States, home health care workers cannot administer enteral feeds or medications, especially if they are paid for by commercial entities. Those caregivers who work for a licensed home health agency usually receive some supervision by visiting nurses.
In addition to overseeing the care of homebound patients receiving care from aides, visiting nurses may be involved in patient’s care directly when a skilled nursing need is identified. Episodic use of skilled home nursing care is frequently needed when a home-based palliative care program is involved in longitudinal care. Skilled home care nursing is typically reimbursed through Medicare Part A under a home health service. Physical, occupational, speech, and respiratory therapists are also available to attend to acute patient care needs.
Patients receiving home palliative care often rely on family and friends to provide most, if not all, of their caregiving needs. Unfortunately, most caregivers are poorly prepared for what this entails. In a focus group conducted by the United Hospital Fund’s Families and Health Care project, caregivers reported lack of information about patients’ diagnoses, prognoses, treatment plans, side effects of medication, and symptoms to monitor, as well as whom to call with questions or concerns .
Burden of caregiving — Informal caregivers (eg, family and friends) caring for a loved one at home are at risk for significant emotional, physical, and financial stress. For example, studies have demonstrated that caregivers, especially those perceiving the work as stressful, are at increased risk for heart attack and death [32-34]. Another study of nearly 1000 patients with end-stage disease (52 percent cancer, 18 percent heart disease, and 11 percent chronic pulmonary disease) and their identified caregivers found that caregivers of patients with substantial care needs experience economic and psychosocial burdens . The burden of caregiving can be reduced by good communication with providers , the assistance and support of an interdisciplinary team , and educational programs .
In addition to education and support provided to caregivers by the interdisciplinary team, tools are available to assess for caregiver burden such as the Zerit assessment . This caregiver self-report questionnaire asks caregivers a range of questions and is available in a variety of languages . Caregiver assessment of distress prompts timely access to additional support, such as social work or behavioral and mental health providers. Unfortunately, respite care as a financially supported service to actively give the primary caregiver a break is a benefit only for patients under hospice care.
A well-coordinated, interdisciplinary care team can have a positive impact on caregiver burden. One study found that involvement in an interdisciplinary home-based primary care program led to decreased unmet needs by caregivers, related to daily chores and transportation needs, and decreased caregiver burden . A study of the effectiveness of an outpatient palliative care team providing interdisciplinary care and care coordination also showed that this support lowered caregiver burden, anxiety, and depression and led to increased perceived quality of life amongst both patients and caregivers . A systematic literature review of patient and carers receiving home-based palliative care found that the most frequently reported unmet need was effective communication with health care providers; other identified unmet needs included psychosocial, practical, informational, and respite.
UNITED STATES COVERAGE FOR HOME-BASED PALLIATIVE CARE — Changes in the United States Medicare reimbursement system penalize hospitals for readmissions that occur within a 30-day timeframe. As a result, there is an increasing incentive to continue support for patients with chronic or complex illnesses across settings of care, as they most often represent the high-acuity, high-cost portion for medical spending. This has led to increased interest in home-based care programs, particularly for patients who are facing a serious life-threatening illness.
Unfortunately, the fee-for-service model of reimbursement in the United States is insufficient to support palliative care in general, even less so the home-based delivery of palliative care. Given the prominent need for care coordination and the interdisciplinary model of care, new financial models that involve per-member, per-month reimbursements or shared savings are being evaluated as effective means to support this delivery of care. These payment models more often align incentives with what is meaningful care for patients and families, and they better address efforts to facilitate population health management. Payment reform in this area is in the early phases and is aligned with changes on a national level in the United States. Information about payment for palliative care is available via the Center to Advance Palliative Care (CAPC) .
DEATH IN THE HOME — In the United States, the percentage of deaths occurring at home has been increasing, and home has now surpassed the hospital as the most common place of death, with 30.7 percent of deaths occurring in the home in 2017 compared with 23.8 percent in 2003 .
When possible, family members and caregivers should be counseled regarding what to expect when it is anticipated that a patient in the home is close to death or at high risk to die suddenly at home. This discussion should include the following (see "Palliative care: The last hours and days of life", section on 'Preparing the family for physiologic changes in the dying process'):
●A review of advance care planning
●Ensuring that appropriate documents around life-sustaining treatment preferences are readily available in the home
●Asking if family or caregivers would like to hear about specific changes they might observe during the dying process
●Making sure that a provider is available by phone for family and caregivers to contact with questions or concern
For patients near death, the interdisciplinary team can help loved ones prepare by facilitating funeral arrangements (eg, having the number of a funeral home on hand) and beginning bereavement screening and support. In the United States, the laws and regulations around responding to a death at home vary, sometimes within individual counties of a state. Therefore, the provider should be familiar with the local regulations regarding death in the home. In addition, it is important that any group providing home-based palliative care and caring for patients dying at home be familiar with the regional regulations within their practice area. (See "Palliative care: The last hours and days of life", section on 'When death occurs'.)
A family or loved one’s reaction to death in the home may vary greatly, even when the death is anticipated. Ideally, a care plan for an expected death is established in advance, such that the provider and loved ones can discuss what to anticipate, access hospice care when eligible, and be confident as to the necessary next steps after death occurs. Sometimes, even in the face of chronic illness, the death seems to come as a surprise and the loved ones can react with great emotion and anxiety.
When death occurs, the focus of the care plan shifts to the family or loved ones. The provider must be attentive to their needs and help facilitate the necessary logistics such as the pronouncement of death, the removal of the body, and the necessary documentation. However, these logistics should be sensitively facilitated so that the family or loved ones do not feel rushed or stressed. Care after death includes :
●Honoring the spiritual and/or cultural wishes of the diseased person and their loved ones/caregivers while ensuring the legal obligations are complete
●Preparing the body for transfer to the mortuary or funeral home
●Offering family and caregivers present the opportunity to participate in the process and supporting them to do so
●Ensuring that the health and safety of those who come in contact with the deceased are protected
●Honoring wishes for organ, tissue, or body donation
●Returning the deceased person’s personal possessions to their relatives
At death in particular, there may be rituals, customs, or religious rites that are very important to a family or their loved ones that should be supported. Inquiry by the provider as to this may be helpful: “Are there any rituals or customs that are important to you to which we should attend?” It may be very helpful for the body to remain in the home for many hours for visitation by family members and loved ones. Funeral homes or crematoriums should be notified and the timing of removal accommodated to family or loved ones’ needs.
Information on death certificates and death investigations is provided elsewhere. (See "Death certificates and death investigations in the United States".)
SUMMARY AND RECOMMENDATIONS
●Patients who benefit from home-based palliative care are typically those with advanced complex illnesses or life-limiting diagnoses associated with functional impairment and a high risk of morbidity and mortality. These individuals most often do not have a predictable prognosis, and many are not eligible for or interested in electing formal hospice services. (See 'Introduction' above.)
●Home-based palliative care services may be offered as part of a geriatrics or primary care practice with expertise in palliative care (primary and palliative care), via integration of a specialty practice of palliative care, or through home care (home health), hospice agencies, or a hospital-based palliative care program. (See 'Models for palliative care in the home' above.)
●In the United States, there are several models for the provision of home-based palliative care services, including the following:
•Primary and palliative care model
•Home health-based model
•Hospice-based and hospice-affiliated models
•Home-based palliative care managed care
●During the home visit, the clinician should define a specific goal or reason for the appointment to substantiate the need for the visit (medical necessity) and the reason it is occurring in the home setting. In the United States, this information helps to justify the appropriateness of billing. (See 'The home visit' above.)
●It is important that an evaluation of the patient’s home also addresses the clinician’s safety in the home or in the neighborhood. (See 'Staff safety' above.)
●Adopting a systematic approach before the visit can help ensure that the visit will be effective and efficient and reduces the likelihood that some important aspect (eg, medication review) of assessment or care is not performed. (See 'Before the visit' above.)
Completing a series of comprehensive assessments reflective of all the Domains of Care of the Clinical Practice Guidelines for Quality Palliative Care ensures consistency and quality. These include physical symptoms; psychological, psychiatric, and cognitive symptoms; illness understanding and care preferences; social and economic needs; cultural issues; religious, spiritual, and existential issues; care coordination and continuity; and assessment of caregiver capacity and distress. The clinician must be open and able to adapt to the acute needs of the patient and their loved ones, which may interrupt a systematic approach and will prioritize the screening and assessment of certain aspects of care.
●A standardized checklist should be used during each visit to ensure that no areas of concern are missed, including symptom assessment, functional assessment, physical safety assessment, medication safety and storage, assessment of nutrition, and evaluation for social support. (See 'During the visit' above.)
●Caring for patients at home provides a unique opportunity to establish relationships with patients, families, and their loved ones in order to facilitate ongoing discussions around advance directives, including documentation of a patient’s health care proxy and stated preferences around resuscitation. Once established, goals of care should be documented in the medical record. In addition, these documents should be readily available in the home. (See 'Advance care planning' above.)
●Caring for a patient in the home requires addressing many medical and psychosocial needs. It is important when providing home-based palliative care to learn about and establish relationships with available community resources. (See 'Communication, care coordination, and collaboration with community agencies' above.)
●Caregivers usually help with activities of daily living such as bathing, dressing, transferring, toileting, and eating, as well as instrumental activities of daily living such as grocery shopping and meal preparation. Informal caregivers (eg, family and friends) caring for a loved one at home are at risk for significant emotional, physical, and financial stress. For example, studies have demonstrated that caregivers, especially those perceiving the work as stressful, are at increased risk for heart attack and death. (See 'Role of caregivers' above.)
●When possible, family members and caregivers should be counseled regarding what to expect when it is anticipated that a patient in the home is close to death, and whenever possible they should be encouraged to access hospice services when available. (See 'Death in the home' above.)