What is hospice care?
There are multiple factors contributing to these short stays and late referral to either palliative care or hospice.
As the population ages, life expectancy increases, and the prevalence of advanced illness rises. Clinicians must be ready to introduce hospice and palliative care services early in a patient’s serious illness trajectory and not in the last days of a patient’s life. Universal ethical principles apply in situations of referral to palliative care and hospice. Advanced directives and shared decision-making support patient autonomy. Beneficence and non-maleficence guide many of the decision points in palliative and hospice care where the focus is on relieving suffering and promoting quality of life. 16 Patients can be referred to hospice while remaining full code, leading to ethical concerns about balancing patient autonomy and avoiding harm. 17 End-of- life decision-making can be especially difficult and ethically challenging for patients with dementia. While decision aids are available to help caregivers make decisions, more research is needed to further develop these tools for use in different ethnic populations. 18 However, while the conversations can be very difficult, the ethical principle of fidelity calls for clinicians to be clear, direct, and truthful about prognosis. 16
A subset of palliative care, hospice care is for individuals who are facing a serious or life-limiting illness of six (6) months or less and is provided by an interdisciplinary team of clinicians. This team provides pain management and emotional and spiritual support that is expressly tailored to the patient’s needs and wishes at the end of life. Hospice care does not end with the patient’s death; bereavement and grief support continue for the family for up to 13 months. 7 Incidence of care and distribution of hospice service To be eligible for hospice, two physicians (including the medical director of the hospice agency) must agree on a patient’s terminal diagnosis. 7 Cancer remains the most common hospice primary diagnosis, while the most common noncancer primary diagnoses are heart and circulatory disorders, followed by dementia. Despite growth in the use of hospice services across all disease groups, 8 racial disparities remain. Population-based cohort data linked to Medicare claims, show that Black patients are more likely to receive intensive therapy in the last 6 months of life and less likely to receive hospice care than White patients. 9 Disparities in access to care, distrust in the healthcare system and advanced care planning, economic factors, faith beliefs, preferred place of death, and overestimation by physicians of time remaining have all been associated with lower hospice and palliative care use in non-White patients. 10 Hospice and palliative care organizations and healthcare professionals can help ensure access and awareness to high-quality care by providing educational programs and outreach and by meeting the cultural and language needs of various groups within their community. Length of stay The median length of stay (LOS) for Medicare patients receiving hospice care was 18 days, and more than 25% of decedents enrolled in hospice during the last week of life. 7,11 Despite having 6 months of eligibility on the Medicare Hospice Benefit, most patients receive care for a few days to a few weeks. Research has shown that a longer LOS benefits patient care, therefore the short median LOS deprives patients and families of support and education needed at the end of life 11 .
Two of these factors are • physician/provider reluctancy or
discomfort with EOL conversations until death is imminent, and • patients’ or families’ lack of acceptance of a terminal prognosis. 12
Physician/ provider reluctance
Barriers affecting timely referrals to hospice care by physicians or other providers include uncertainty of prognosis, ignorance regarding the criteria for admission to hospice services, and discomfort in discussing the prognosis with the patient and family. 13 More specifically, providers find it hard to estimate when a patient has met the criteria of 6 months or less expected time left. 13 In addition, many healthcare providers have difficulty speaking about EOL. According to, 14 there is an aspect of avoidance and emotional stress among physicians: “One physician stated, ‘Sometimes I can get very close to people, and I don’t want to do it, too, so sometimes it’s my own personal barrier.’” 14(p873) Because of this delay, oftentimes the patient is imminently or actively dying when the physician or other healthcare provider makes the decision to approach the family. Patients’ or families’ lack of acceptance Many hospice clinical teams point out that families are misinformed about what hospice care is and that it makes them feel as if they are giving up on their loved one. 14 The most common misconception was that a person can only go to hospice when they are imminently dying. 14 In one study that looked at barriers to hospice care, participants commented on both the beneficial and potentially detrimental beliefs, including how families can find comfort at EOL; however, sometimes the hope of a miracle “could lead to prolonged suffering because of nonmedically indicated life- sustaining measures.” 14 In addition, patients and families are often unclear about the differences between palliative care services and hospice. 12 Barriers further emphasize the need for clinicians to educate themselves on the benefits of early palliative care and hospice referrals, as these services have been proven to improve quality of life, patient outcomes and goals, and reduce costs. 15
Levels of hospice care and services
There are four levels of hospice care, defined by Medicare, which correspond to both acuity level and payment structure: Routine home care, continuous (aka crisis) home care, respite care, and general inpatient care. 19 1. Routine home care: The level of care that most patients could receive at home. This level of care consists of interdisciplinary care delivered on an intermittent basis at the patient’s home, and it may include skilled nursing facilities (SNFs), group homes, and assisted living facilities. 20 2. Continuous home care: Used when patients have symptom management needs that require temporary 24-hour support. 20 This level of care, also known as crisis care, assists patients who may require a higher level of nursing care but desire to stay at home. 20 3. Respite care: Caregivers are allowed a period of rest while patients are cared for by an interdisciplinary team in a facility. In respite care, patients are allowed 5 days of care while on hospice services.
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