By Dr. Angela Schmidt, Professor Emeritus
College of Nursing and Health Professions
Arkansas State University
Transitioning from one care setting to another in the United States Healthcare system, has become complex and problematic, especially for older adults and other vulnerable populations.
Included in these transitions is hospice care, provided at home, in a hospital, a nursing home, or in a facility specifically designated for hospice care delivery. This care delivery is holistic and is delivered by an interdisciplinary team of physicians, nurses, social workers, therapists, clergy, and often volunteers. It is available to any person regardless of age, race, or illness. The goal of hospice is comfort instead of cure, to be pain free with aggressive methods as necessary. The philosophy of hospice is to provide supportive care for the patient’s emotional, social, and spiritual needs, as well as these medical symptoms, as part of holistic care delivery.
Services provided in hospice care include prescribing drugs to control pain and manage other symptoms; physical, occupational, and speech therapy; medical supplies and equipment; medical social services; dietary and other counseling; continuous home care at times of crisis if home setting; and bereavement services. Although hospice care does not aim for cure of the terminal illness, it may treat potentially curable conditions such pneumonia and bladder infections, with brief hospital stays if necessary. Hospice programs also may offer respite care workers, people who are usually trained volunteers, who take over the patient’s care so that the family or other primary caregivers can leave the house for a few hours. Some facilities where hospice care is provided also include volunteer caregivers as a part of the hospice philosophy.
In the mid-1970s when hospice came to the U.S., most hospice patients had cancer. Today, more than half of hospice patients have other illnesses for which they are medically eligible for hospice services, such as late-stage heart, lung or kidney disease, and advanced Alzheimer’s disease or dementia. Hospice also once was exclusively for adults, especially elderly people, but today many hospice programs accept infants, children and adolescents
In a significant research study, published by The Journal of American Geriatric Society (Amann & LeBlanc, 2014), researchers found that cancer and advanced dementia were the conditions that most often resulted in being admitted for hospice care. The duration of hospice care was less than 13 days for half of these study participants. The short duration of hospice suggested that healthcare providers might need to consider discussing referrals to hospice sooner with people who are approaching the end of their lives.
Further, the study revealed that older adults who were frail were least likely to be admitted for hospice. However, the most common condition leading to death was frailty (syndrome of physiologic decline in later life), followed by organ failure, advanced dementia, and then cancer. The researchers suggested that referral to hospice at the end of life should be based on an older adult’s burden of pain and other distressing symptoms including frailty, as well as consideration of earlier hospice referrals. (Amann & LeBlanc, 2014)
A National Hospice Foundation Survey noted that 90% of Americans were unaware that hospice care is a covered Medicare service. To be eligible to receive hospice services, a hospice physician and a second physician (often the individual’s attending physician or specialist) must certify that the patient meets specific medical eligibility criteria; generally, the patient’s life expectancy is 6 months or less if the illness, disease or condition runs its typical course. However, if the individual lives longer than six months and the condition continues to decline, recertification by a physician or nurse practitioner for additional time in hospice care. Similarly, if a hospice patient’s condition improves, the individual may be discharged from hospice care. The patient is eligible for hospice again if his or her condition begins to decline. The decision to consider hospice services, as recommended by the Hospice Foundation of America, should include: 6 months or less to live, according to a physician; rapidly declining despite medical treatment (weight loss, mental status decline, inability to perform activities of daily living); and readiness to live more comfortably and forego treatments aimed at prolonging life. Many health care service options for transitions of care are determined by financial considerations. The type of insurance coverage the patient has determines of-of-pocket payments for hospice care. Hospice services usually follow Medicare requirements to provide the following:
- Time and services of the care team, including visits to the patient’s location by the hospice physician, nurse, medical social worker, home-health aide and chaplain/spiritual adviser;
- Medication for symptom control and/or pain relief;
- Medical equipment, such as wheelchairs or walkers and medical supplies like bandages and catheters;
- Physical, occupational, and speech therapy if needed;
- Dietary counseling;
- Any other Medicare-covered services needed to manage pain and other symptoms related to the terminal illness;
- Short-term inpatient care if in home setting and pain and/or symptom management cannot be achieved;
- Short-term respite care if temporary relief from caregiving is needed to avoid or address “caregiver burnout”; and
- Grief and loss counseling for patient and loved ones.
However, not all services provided to patients enrolled in hospice care are covered by the Medicare Hospice Benefit. The hospice benefit will not pay for:
- Treatment intended to cure your terminal illness or unrelated to that illness;
- Prescription drugs to cure your illness or unrelated to that illness;
- Room and board in a nursing home or hospice residential facility; and
- Care in an emergency room, inpatient facility care or ambulance transportation, unless it is either arranged by the hospice team or is unrelated to the terminal illness.
Note that not covered is “room and board” which is misunderstood by consumers when most resources state, “Medicare covers hospice care”. Even care received in a hospice facility can charge the patient for room and board daily not covered by Medicare, although the above allowed services may be covered. Six months or 180 days at 140-$200 per day (totaling $25,000-$36,000) for room and board, may be an out of pocket personal expense. In addition, some medications are not included. For example, some intravenous (IV) medications that are not related to the terminal illness are not covered by hospice. Even dehydration occurring as a natural process in a terminal illness does not allow IV fluids. Further, most antibiotics are not covered by hospice unless they are for palliative needs only. What lacks clarification is that the patient can have these treatments/services but the patient would be responsible for payment. Even though there are many exceptions to coverage, Medicare Part A supplies items such as diapers, medications, and equipment related to the terminal illness, while Medicare Part B covers physician charges. The patient is responsible for any deductible amounts and for any charges not covered as described.
Most hospice patients, especially elderly ones, are eligible for Medicare, which covers most aspects of hospice care and services as long as it is related to the terminal illness. There is no deductible for hospice services although there may be a very small co-payment for prescriptions and for respite care. In most states, Medicaid offers similar coverage. Medicare coverage also includes Medicare Advantage Plans. Many private health insurance plans offer hospice benefits but the extent to which they cover hospice care and services may differ from Medicare as well as from one another. Military families have hospice coverage through Tricare. Most hospices will accept private payment, or “self-pay.” Some hospices have mechanisms by which they can provide services to people who are medically eligible but have neither insurance nor the resources to pay for their care.
Hospice care is given in benefit periods. You can get hospice care for two 90‑day periods followed by an unlimited number of 60‑day periods. Although medical eligibility generally relies on the physician’s opinion that the patient’s life expectancy is 6 months or less, neither the patient nor the physician is penalized if the patient lives longer than 6 months. The patient can be re-certified for as long as he/she continues to be medically eligible. It is also possible with hospice care that a patient’s condition stabilizes and may even improve sufficiently so they no longer meet medical eligibility for hospice services. At that time, the patient is “discharged” from the hospice program and their Medicare benefits revert to the coverage they had before electing hospice care.
(see https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/Hospice )
Hospice patients may choose to pursue curative therapies such as entering a clinical study for a new medication or procedure. In order to do so, the patient must withdraw their selection of hospice care, called “revocation.” Patients who are discharged as well as any who choose to leave hospice care can re-enroll at a later date without penalty at any time they meet the medical eligibility criteria.
To ensure health care providers, facilities, and consumers are aware of hospice service benefits, CMS announced a “Value-Based Medicare Advantage Model” in 2019. This initiative is intended to accelerate the development and testing of new payment and service delivery models for hospice. In October 2019, President Trump issued an Executive Order on “Protecting and Improving Medicare” for our nation’s seniors to include this hospice delivery model. Through both this announcement and a separate RFA that CMS released in January 2020 for other components of the VBID model, CMS is implementing key provisions of the President’s Executive Order. Medicare Advantage (MA) organizations will finalize their VBID plan designs for all components of VBID by the 2021 bid deadline of June 1, 2020.
“Hospice patients find themselves in a particularly vulnerable and difficult time, and the Trump Administration wants to make every provision possible to allow them to focus on their loved ones and their care, rather than government bureaucracy…….This Model is a vital element of that effort. By expanding benefits and coverage and igniting greater coordination, it promises to improve quality of care and quality of life for our nation’s seniors. The result of our efforts has been a dramatic increase of participation in the VBID Model and the value-based, coordinated care it can provide.”
(see press release https://www.cms.gov/newsroom/press-releases/cms-announces-strong-participation-value-based-medicare-advantage-model-cy-2020-and-new )
By reducing fragmentation and increasing financial accountability, CMS is enabling organizations to better coordinate palliative and hospice care for beneficiaries that choose Medicare Advantage.
Arkansans need to improve our knowledge and use of hospice care to ensure that all those who will benefit from hospice care earlier in the course of a serious illness have access to compassionate, high-quality care that proves to be an appropriate transition of care. This needed resource for many elderly people is often overlooked and underused. In 2018, the proportion of Medicare decedents enrolled in hospice at the time of death varied from a low of 13% (other) to a high of 59.4% (UT) with AR ranking 21st at 50%. More facts and figures for hospice care in the United States and Arkansas and the use of hospice services are available from, The National Hospice and Palliative Care Organization (NHPCO), https://www.nhpco.org/wpcontent/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf, in their facts and figures report.