CME: Hospice and Palliative Care — Are They Different?
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- 2 hours ago
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Understanding hospice and palliative care eligibility, timing, care models, and outcomes to improve serious illness and end-of-life decision-making.
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Hospice and Palliative Care
Are They Different?
Stuart M. Caplen, MD
Palliative medicine is specialized medical care for people with serious or life-limiting illnesses. Hospice focuses on end-of-life care for patients with a life expectancy of six months or less and often incorporates palliative care. This article reviews the history, structure, and effectiveness of both models of care.
History
The hospice movement originated in London, England, in 1967, when Dame Cicely Saunders founded St. Christopher’s Hospice. Drawing on her experience as a social worker, nurse, and later a physician, Dame Cicely Saunders observed significant untreated pain and suffering in patients approaching the end of life, which led to the development of modern hospice care. She discovered and popularized the concept that regularly scheduled opioid doses can provide effective pain relief while allowing patients to remain alert and responsive.[1]
In 1974, after visiting and working with Dr. Saunders, Florence Wald, an American nurse, founded the first hospice in the United States in Branford, Connecticut. Congress authorized the hospice benefit in 1981, with Medicare reimbursement beginning in 1983.[1]
Dr. Balfour Mount, who was a surgical oncologist at the Royal Victoria Hospital in Montreal, Canada, coined the term “palliative care” to avoid negative connotations of the word “hospice” in French-speaking Quebec. In France, hospices were traditionally run by religious orders that provided food and shelter for the destitute, sick, and elderly.
The first hospital-based palliative care program in the United States was established in 1985 at the Wayne State University School of Medicine in Detroit, Michigan.[1]
What Is Hospice Care?
Hospice is a health care delivery system for patients at the end of life. By statute, hospice is specifically limited to patients with a prognosis of six months or less to live and, in the U.S., is covered as a benefit by Medicare, Medicaid, and most private insurance companies.[1]
Hospice is both a philosophy and a system of care delivery and is not limited to a specific location.
There are four levels of hospice care:
Routine hospice care can occur at home, nursing home, or in an assisted living facility.
Inpatient hospice care is used to treat acute symptoms or emergencies that cannot be managed in another setting. It provides short-term clinical support in a hospital, hospice facility, or skilled nursing home.
Continuous care is used for crisis management for a hospice patient, such as terminal agitation or severe pain, to support continued management of the patient at home. It typically provides nursing care for eight to 24 hours a day and homemaker or hospice aide services may supplement the nursing care.[2]
Respite care provides temporary relief for the hospice patient’s primary caregiver(s). Respite care can be provided for up to five days[3] in a hospital, hospice facility, or more commonly in a long-term care facility to provide the caregiver(s) with some rest before they resume home care.[1]
Although hospice care may last up to six months, one study reported that 32.4% of patients in hospice die within seven days and 10.5% live more than 180 days. These statistics highlight the challenge physicians face to accurately predict life expectancy. Given that nearly one-third of hospice patients die within one week of enrollment, these findings suggest underuse of hospice services and indicate that earlier referral may be beneficial.[4]
How Is a Patient Determined to Be Eligible for Hospice?
Hospice eligibility requires the following three criteria to be met:
Two physicians must certify that the patient is terminally ill.
The patient or surrogate must elect comfort-focused care rather than curative treatment for the underlying terminal disease.
The patient or surrogate must sign a statement electing the hospice benefit.[1]
The Centers for Medicare & Medicaid Services have specific criteria and documentation requirements to establish hospice eligibility and to ensure coverage, which can be accessed at this link.[5]
Hospice care requires recertification by the hospice physician after the initial 90-day benefit period, again after an additional 90 days, and every 60 days thereafter. If a patient’s prognosis improves during hospice care and estimated life expectancy becomes more than six months, the patient can then be discharged from hospice. It has been reported that about 6.7% of hospice patients do improve enough to be discharged.[1]
Hospice care usually involves a multidisciplinary team that typically includes physicians, nurses, therapists, home health aides, social workers, bereavement counselors, and chaplains. Hospice services are often more intensive during initial evaluation period, as well as in the final two weeks of life when the patient may require additional supportive care. Medicare permits increased benefits during those periods.[1]
Bereavement resources are also available to the patient’s family for one year following the patient’s death as part of hospice care.[1]
Hospice Ratings
Medicare has compiled comparative quality ratings for hospices, which are publicly available at this website. The Office of the Inspector General issued a report on hospice care in 2019 and determined that 18% were considered poor performers. Deficiencies found included:
Providing fewer services than required
Failing to address individual needs
Inadequate supervision or training of aides
Failing to monitor medications
Failing to assess pain
Failing to update comprehensive assessments on a regular basis
Failing to obtain criminal background checks or ensuring staff had proper credentials
Failing to effectively manage pain
Failing to properly treat severe wounds
Failing to provide volunteer services (all hospices are required to use volunteers)
Failing to notify the physician of worsening or new symptoms
Lack of required contracts with inpatient facilities, as required by regulation[6]
Palliative care
Palliative care has been defined as care that supports patients with serious illness by relieving pain and other symptoms, improving quality of life, and aligning treatment with the values and goals of patients and their families.
Palliative care should be offered early in the course of treatment for a serious illness and can be delivered in various health care settings, including at home, in nursing homes, long-term acute-care facilities, hospitals, and outpatient clinics.[7] Unlike hospice care, palliative care is not limited to end-of-life care and may be provided at any stage of a serious illness which negatively impacts quality of life or daily function, and/or places a significant burden on caregivers.[1]
Palliative care is an interdisciplinary model that can vary by geographic region, setting (inpatient or outpatient), and disease being treated. Examples of illnesses that might be approved for palliative care but not hospice include chronic respiratory, renal, cardiac, or neurodegenerative diseases.
Palliative care consists of eight core domains (also called components).
The structure and processes - Personnel on the interdisciplinary team and definition of how assessment and care will occur.
Physical - Assessment and treatment of concerning symptoms and planning of the patient’s care.
Psychological - Assessment and treatment of psychological or psychiatric issues in the person with severe or terminal disease.
Social - Assessment of social support needs of the patient and family.
Spiritual - Assessment of spiritual and religious needs and support needed
Cultural - Assessment of how cultural influences will affect how care will be delivered.
End-of-Life - Focusing on how care and support will be provided in the period near end of life.
Ethical and Legal - Planning for surrogate decision-making, advance directives, and legal and ethical issues at the end-of-life.[1,8]
Palliative care requires collaboration with patients, families, or surrogates. Decision-making preferences exist along a spectrum, ranging from patient- or family-directed decision-making to shared decision-making and, in select situations, physician-directed decision-making. Providers must assess which approach is most appropriate for each patient and family.[1]
How Effective is Palliative and Hospice Care?
Substantial evidence supports the effectiveness of palliative and hospice care.[1] In one study, institution of a palliative care program reduced hospital admissions by 34%, reduced costs by approximately $12,000 per patient in the last three months of life, and increased median hospice length of stay by 24 days, compared to patients not receiving palliative care.[9] A large systematic review reported statistically significant improvements in both patient and caregiver outcomes associated with palliative care such as quality of life and symptom reduction for cancer, congestive heart failure, and chronic obstructive pulmonary disease. Palliative care also significantly reduced hospital use resulting in cost savings.[10]
Another study reported that patients with cancer who were in hospice for two months or more had improved quality-of-life scores compared to those who were in hospice one week or less, suggesting that early referral of patients to hospice may be advantageous.[11]
Early initiation of palliative care was associated with improved survival of cancer patients in several studies.[12,13]
One of the key strengths of hospice and palliative care is the opportunity for communication and discussing end-of-life issues with patients and family.[10,11] One report noted that at an average of four months prior to death only 37% of advanced cancer patients had participated in end-of-life discussions. When end-of-life conversations had occurred, patients reported better quality of life, received less aggressive medical care near death, and were referred earlier to hospice. In addition, when end-of-life issues were not discussed, bereaved caregivers experienced worse quality of life, more regret, and were at higher risk of developing a major depressive disorder a median of 6.5 months later.[11]
How Many Patients Require Palliative Care but Don’t Receive It?
The World Health Organization (WHO) estimates that worldwide, 56.8 million people, including 25.7 million in the last year of life, are in need of palliative care. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%), and diabetes (4.6%). Other conditions that may require palliative care include kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, dementia and other neurological diseases, rheumatoid arthritis, congenital anomalies, and drug-resistant tuberculosis.[14]
The WHO identifies four issues that prevent palliative care from reaching more people.
Lack of awareness among policymakers, health professionals, and the public about what palliative care is, and the benefits it can offer patients and health systems.
Cultural and social barriers, including beliefs about death and dying.
Misconceptions about palliative care, such as that it is only for patients with cancer or for the last weeks of life.
Misconceptions that improving access to opioid analgesia will lead to increased substance abuse.[14]
Palliative Care in the U.S.
In the U.S., it is estimated that 13 million adults and 700,000 children who could benefit from palliative care do not receive it.[15]
Hospital palliative care programs have expanded substantially over the years. As of 2022, 84% of U.S. hospitals with fifty or more beds reported a palliative care team, up from 67% in 2015 and 7% in 2001. Currently, 96% of all hospitals with 300 or more beds have a palliative care team.[15] However, availability of palliative care is lower in for-profit hospitals (49%) and rural hospitals (34%). In 2024, there were 19,920 clinicians across all disciplines in the U.S. with specialty certification in hospice and palliative care. This equates to 2.86 prescribers (physicians, advanced practice nurses, and physician assistants) per 100,000 population, which is far below most other medical specialties. According to the Center to Advance Palliative Care, this is insufficient to meet the estimated demand.
In the U.S., there are reportedly geographic differences in a patient’s ability to access and receive quality palliative care as well as varying state support for clinician education. The Center to Advance Palliative Care has created a state-by-state rating system which can be accessed here.[16]
Pain Management in Palliative Care
Pain management is a key component of palliative care, with opioids and other adjuvant medications and treatments frequently required to decrease pain and suffering.
![The WHO Three-step Analgesic Ladder[17]](https://static.wixstatic.com/media/ad4816_bbe775d9702441c691067a339536cf09~mv2.png/v1/fill/w_61,h_60,al_c,q_85,usm_0.66_1.00_0.01,blur_2,enc_avif,quality_auto/ad4816_bbe775d9702441c691067a339536cf09~mv2.png)
A full discussion of the subject of pain relief in patients requiring palliative care is beyond the scope of this learning activity, but some suggested resources include: The American Society of Clinical Oncology Guidelines [18] and The WHO Guidelines for the Pharmacological and Radiotherapeutic Management of Cancer Pain in Adults and Adolescents.[17]
Summary
Hospice is a care model intended for patients in the final six months of life who have chosen comfort-focused care rather than disease-directed treatment. Palliative care is a multidisciplinary approach that addresses pain and other symptoms, psychosocial needs, and patient values and treatment preferences at any stage of serious illness and may be provided alongside curative or life-extending therapies. Hospice care most commonly includes palliative care, and both models may care for patients in the home, in a long-term nursing facility, in a hospice facility, or in a hospital. Hospice and palliative care have been shown to decrease end-of-life costs, reduce hospital admissions, improve quality of life, possibly improve survival in some cases, improve communication, and support family members both during the illness and after the patient dies. Despite these benefits, hospice referrals often occur late in the disease course, thereby limiting their potential impact.
Within the United States and globally, millions of patients who could benefit from palliative care lack access to these services. In the U.S., there are regional differences in the ability to receive palliative care services, and an insufficient number of specialty-certified clinicians to meet demand.
Author’s note: Thank you to Theodor Feigelman, MD for editing this article.
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