What is Hospice and Palliative Care? | Eligibility for Hospice Care
Who Pays for Hospice Care? | What is the Medicare Hospice Benefit?
Questions to Consider When Choosing a Hospice | Bill of Rights | Hospice for Veterans

What is Hospice and Palliative Care?

Hospice

Hospice is a philosophy of care that accepts death as a natural part of life, seeking neither to hasten nor prolong the dying process.Caring that strives to help patients truly "live until they die" - without the fear of dying in pain, dying alone or losing control.

Hospice is a comprehensive, medically directed, team-oriented program of care that seeks to treat and comfort terminally ill patients and their families at home or in a home-like setting, establishing pain management and symptom control as clinical goals, and understanding that psychological and spiritual pain are significant as physical pain.

Palliative Care

Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.

The measure of life is not its length, but its fullness. Palliative care means making every day the best it can be. In Chinese, the symbol for palliative care stands for "nurturing living." The emphasis is adding life to days rather than days to life.

Dignity in human life includes the balance of the human physical, emotional and spiritual capacities. Palliative care attempts to create a balance in these areas. Palliative care expands traditional disease-model medical treatments to includes the goals of enhancing quality of life for a patient and family.

Programs and Services

Hospice care is a particular type of compassionate care that addresses all the needs of a person who becomes very ill - not just the immediate physical needs, but also the emotional, psychological, social and spiritual needs. In addition, hospice addresses the needs of the family and friends of the ill person to the greatest extent possible so that all concerned can maintain dignity and quality of life. An important part of hospice is that patients and families help decide what care is right for them. All patients have certain rights to care, which includes:

  • Treatment related to the life-limiting illness that is included in the hospice plan of care, plus medical equipment and supplies, services, and coordination of care.
  • Medications to control the pain and other symptoms of the life-limiting illness.
  • Hospice inpatient care (both acute care and respite care) in a hospice facility.
  • Home visits by hospice staff, plus skilled in-home nursing for crisis management.
  • Consulting physicians.
  • Volunteer support.
  • Bereavement follow-up.

Hospice is a choice, not a requirement. The patient may choose to withdraw from the hospice plan of care at any time to seek other medical treatments that may become available.

Eligibility for Hospice Care

For a patient to elect hospice care:

  • two physicians must certify that the patient has a terminal illness and is expected to live six months or less
  • the hospice must determine that care can be provided in safe surroundings
  • the patient must give "informed consent" -- that is, be informed about the goals and purposes of hospice care

Hospice care is available regardless of race, ethnicity, nationality, gender, marital status, sexual orientation, religious belief, diagnosis or disability.

Misconceptions regarding hospice care:

  • Hospice is not just for the last few days or the last two weeks. Hospice is designed to care for the patient and family during the last months of life.
  • Hospice is not a "crisis" service. Patients and families should ask their doctor whether curative treatment will work and what burden it will place on the patient. An early hospice admission helps the patient and family get the full benefit of hospice services, including the emotional support and family services.
  • Hospice is not a "place" -- it is a kind of care and a set of services. Hospice care is typically delivered in the patient's own home, a nursing home or in assisted living. Other locations can include a hospital or a "hospice house."
  • You do not have to be "ready to die" to receive hospice care. Rather, you should be seeking comfort and an improved quality of life. Hospice is ready to help you and your family make the most of the time that's left.
  • Under normal circumstances, hospice does not provide services in the home around the clock or for "shifts" that allow family members to go to work. Hospice team members provide services during visits that may last a half-hour, an hour or two.
  • You may continue to see your own doctors, whether for your terminal illness or other illnesses.
  • You need not be home-bound to receive hospice care. Many patients are out-and-about at times, and some make trips while under hospice care.
  • You may leave hospice care at any time. If you would like to return to curative treatment, discuss it with your hospice team. You will be eligible to re-enter hospice at any time without penalty.
  • Hospice does not conflict with the beliefs of any major religion. All faiths recognize the value of spiritual support, pain relief, symptom management and counseling during the final phase of life.
  • Hospice is not just for the elderly or just for Medicare patients. Hospice serves patients of all ages, from infants to centenarians.
  • Hospice is not a financial burden. Hospice services are covered by Medicare Part A, Medicaid and many private insurers. Most hospices have a sliding scale for poor patients and some provide charity care for the truly destitute. The vast majority of patients and families never receive a bill from hospice.
  • You may decline specific hospice services such as volunteers and housekeeping support.
  • Hospice will neither hasten nor delay death. Hospice seeks to improve the patient's quality of life and allow dying to take place naturally. It will not extend life through artificial or mechanical means. Nor will it shorten life through assisted suicide.
  • There is no limitation on how long you can receive hospice care. True, your physician must certify that you are expected to live six months or less, but hospice services need not end at six months. Hospice care can extend well beyond the original six-month life expectancy.

Who Pays for Hospice Care?

Medicare, private health insurance and Medicaid in Missouri covers hospices care for patients who meet eligibility criteria with any helathcare program, there may be "co-pays" and deductibles that families pay to receive care. Many hospices also reply on community support for donations. While each hospice has its own policies concering payment for care, it is a traditional of hospice care to offer services based upon need, rather than the ability to pay.

Hospice services are paid for by Medicare, Medical Assistance, MinnesotaCare and commercial insurance. Your hospice program works with you and your family to identify ways to pay for services.In most instances there is no cost to patients for hospice services.

Medicare

Hospice care is covered by the Medicare Hospice Benefit (Part A). You may choose this comprehensive benefit if:

  • you are eligible for Medicare Part A.
  • your physician and the hospice medical director certify that you have a terminal illness with a life expectancy of six months or less.
  • you enroll in hospice instead of the standard Medicare benefits for care of the terminal illness.
  • you receive care from a Medicare-certified hospice program.

Medicare pays only for services that are authorized by the hospice program. You may discontinue the hospice benefit at any time and resume your standard Medicare benefit.

While enrolled in hospice, standard Medicare benefits are still available for treatment of health problems unrelated to the terminal illness, and all Part B benefits for physician services are also available.

If the hospice you choose is not Medicare certified, it will provide some services and will work with other agencies to provide services that will be paid for by Medicare.

Missouri Medicaid

If you are eligible for Missouri Medicare, you also have a hospice benefit, which includes the same services as the Medicare Hospice Benefit.

Missouri Hospice Medicaid Project

Commercial Insurance

If you have health care coverage through an insurance company, contact your insurance company to find out specific coverage.

What is the Medicare Hospice Benefit?

Medicare beneficiaries who choose hospice care as a Medicare Benefit receive a full scope of non-curative medical and support services for terminal illness.

Downloadable brochure:

Medicare Hospice Benefit Brochure

Medicare Hospice Benefit Brochure(large print)

Medicare Hospice Benefit Spanish

Medicare Hospice Payment System Fact Sheet

Medicare covers the following hospice services:

  • Physician Services
  • Nursing Care
  • Medical Appliances and supplies
  • Drugs for symptom management and pain relief
  • Short-term inpatient and respite care
  • Homemaker and home health aide services
  • Physical therapy, occupational therapy and speech/language pathology services
  • Counseling
  • Social Work service
  • Spiritual Care availability
  • Volunteer participation
  • Bereavement services

When a patient receives these services from a Medicare-certified hospice, almost the entire cost is covered by the benefit, and the only expense to the patient is limited cost-sharing for outpatient drugs and inpatient respite care.

Drugs or biologicals - The hospice can charge five percent of the reasonable cost, up to a maximum of $5, for each prescription for outpatient drugs or biologicals for pain relief and symptom management.

Inpatient respite care - The hospice may periodically arrange for inpatient care for the patient to give temporary relief to the person who regularly provides care in the home. Respite care is limited each time to a stay of no more than five days. The patient can be charged about $5 per day for inpatient respite care. The charge, which is subject to change each year, varies slightly depending on the hospice's geographic area.

Who is eligible for the Medicare hospice benefit?

Medicare coverage for hospice care is available only if:

  • The patient is eligible for Medicare Part A;
  • The patient's doctor and the hospice medical director certify that the patient is terminally ill with a life expectancy of six months or less, if the disease runs its normal course;
  • The patient signs a statement choosing hospice care instead of standard Medicare benefits for the terminal illness; and
  • The patient receives care from a Medicare-approved hospice program.

How long can a patient retain care under the Medicare benefit?

A Medicare beneficiary may elect to receive hospice care for two 90-day periods, followed by an unlimited number of 60-day periods, and when necessary, an extension period of indefinite duration. The benefit periods may be used consecutively or at intervals. Regardless of whether they are used one right after the other or at different times, the patient must be certified as terminally ill at the beginning of each period.

A patient has the right to cancel hospice care at any time and return to the standard Medicare coverage, then later re-elect the hospice benefit if another benefit period is available. If a patient cancels during one of the first three benefit periods, any days left in that period are lost. For example, if a patient cancels at the end of 60 days in the first 90-day period, the remaining 30 daysare forfeited. The patient is, however, still eligible for the second 90-day period, the 30-day period, and the indefinite extension. If cancellation occurs in the final period, the patient returns to standard Medicare coverage and cannot use the hospice benefit again.

Besides having the right to discontinue hospice care at any time, patients also may change hospice programs once during each benefit period.

Studies confirm that it is possible to provide compassionate and comprehensive hospice care to terminally ill patients and also saves money over traditional medical treatment. An Analysis of the Cost Savings of the Medicare Hospice Benefit was conducted by Lewin-VHI, a Washington based health care consulting firm.

According to the study, hospice care - designed so patients do not die in pain, alone or without personal dignity - saves money while meeting these very basic and important human needs. Hospice care is an interdisciplinary, individualized form of care that emphasizes pain control and symptom management rather than attempting curative treatment.

The study compared the relative cost of hospice care to conventional care for medicare beneficiaries with cancer. Analysis of beneficiaries' claims found that for every dollar Medicare spent on hospice patients, it saved $1.52 in Medicare Part A and Part B expenditures.

"In an environment where there is such intense scrutiny of health care costs, this study shows that hospice services more than pay for themselves," said John J. Mahoney, past president of the National Hospice & Palliative Care Organization. "I would hope that managed care and other organizations would take this information into consideration when deciding what services they will offer to terminally ill patients and their families."

Other results of the study include:

As found in an earlier CMS study, savings with hospice care were greatest in the last months of life. These savings totaled $3,192 in the last month of life.

According to Mahoney, these new findings are particularly encouraging given the number of changes in the health care environment over the past six years, many of which might impact the relative cost-savings associated with hospice. These changes include:

  • The full implementation of Medicare's Prospective Payment System for hospitals;
  • Increased payment rates for hospice;
  • A growing number of Medicare beneficiaries choosing hospice; and
  • Expanding lengths of enrollment for hospice users.

While the majority of hospice patients have cancer, hospice also care for people suffering other terminal illnesses, such as AIDS and heart disease. Contemporary hospice care developed in response to concerns that traditional medical care, with its emphasis on technology, had become increasingly insensitive to the needs of terminally ill patients and their families.

Questions to Consider When Choosing a Hospice

  1. What are the hospice's admission policies and procedures? How well do these fit your unique needs?
  2. From the very first phone call, does the agency project an attitude that is patient, caring, competent and confidence-inspiring? Or do you hear a lot of jargon and conditions and restrictions?
  3. If you are uncertain about whether hospice is right for you, what kinds of consultation or assessment will the agency offer to help sort out your uncertainty?
  4. How quickly can the hospice initiate services?
  5. What are the geographical boundaries or other limits to its services?
  6. What are its policies on inpatient care and where is the inpatient care provided, if this should become necessary? How long can patients stay there? Can you tour the unit? Does the hospice contract with local nursing homes? Which ones?
  7. Is participation in the care by a family caregiver required as a condition of hospice enrollment? What is expected from the family caregiver, and what can the hospice offer to supplement the family's responsibilities?
  8. What is the hospice's past relationship with your personal physician? Can they work together effectively? Does the hospice medical director make home visits, when needed?
  9. Who provides on-call coverage? What is the average wait to get your call answered when you have an after-hours emergency, and how quickly can a nurse come to your home, if that is needed?
  10. How often do the nurse, social worker and aide visit typically, and for how long each time? Is it usually the same person? What is the average caseload managed by each nurse?
  11. How does the hospice define "palliative" treatments? Are certain treatments automatically excluded? If you require expensive high-technology therapies or devices to manage pain and other symptoms, will this be an issue?
  12. What out-of-pocket expenses should you expect?
  13. What hospital and nursing homesdoes the hospice contract with for inpatient and respite care?

The questions and answers above are adapted with permission from "The Hospice Handbook: A Complete Guide," by Larry Beresford, published in 1993 by Little, Brown & Co. This book is still in print and can be ordered through most bookstores.

Bill of Rights

The Hospice Association of America has developed the following Hospice Patients' Bill of Rights, which is widely accepted by hospices in the United States.

Patients have a right to be notified in writing of their rights and obligations before hospice care begins. Consistent with state laws, the patient's family or guardian may exercise the patient's rights when the patient is unable to do so. Hospice organizations have an obligation to protect and promote the rights of their patients, including the following:

Patients and their hospice caregivers have a right to mutual respect and dignity. Hospice staff and volunteers are prohibited from accepting personal gifts and borrowing from patients/families/primary caregivers.

Dignity and Respect

Patients have the right:

  • to have relationships with hospice organizations that are based on honesty and ethical standards of conduct
  • to be informed of the procedures they can follow to lodge complaints with the hospice organization about the care that is (or fails to be) furnished and regarding a lack of respect for property
  • to know about the disposition of such complaints
    •to voice their grievances without fear of discrimination or reprisal for having done so

Decisionmaking

Patients have the right:

  • to be notified in writing of the care that is to be furnished, the types (disciplines) of caregivers who will furnish the care, and the frequency of the services that are proposed to be furnished
  • to be advised of any change in the plan of care before the change is made
  • to participate in the planning of the care and in planning changes in the care, and to be advised that they have the right to do so
  • to refuse services and to be advised of the consequences of refusing care
  • to request a change in caregiver without fear of reprisal or discrimination
  • The hospice organization or the patient's physician may be forced to refer the patient to another source of care if the client's refusal to comply with the plan of care threatens to compromise the provider's commitment to quality care.

Privacy

Patients have the right:

  • to confidentiality with regard to information about their health, social and financial circumstances and about what takes place in their home
  • to expect the hospice organization to release information only as consistent with its internal policy, required by law or authorized by the client

Financial

Patients have the right:

  • to be informed of the extent to which payment may be expected from Medicare, Medicaid or any other payor known to the hospice organization
  • to be informed of any charges that will not be covered by Medicare
  • to be informed of the charges for which the patient may be liable
  • to receive this information, orally and in writing, within 15 working days of the date the hospice organization becomes aware of any changes in charges
  • to have access, upon request, to all bills for service received, regardless of whether they are paid out-of-pocket or by another party
  • to be informed of the hospice's ownership status and its affiliation with any entities to which the patient is referred

Quality of Care

Patients have the right:

  • to receive care of the highest quality
  • to be admitted by a hospice organization only if it is assured that all necessary palliative and supportive services will be provided to promote the physical, psychological, social and spiritual well-being of the dying patient. An organization with less than optimal resources may, however, admit the patient if a more appropriate hospice organization is not available - but only after fully informing the client of its limitations and the lack of suitable alternative arrangements
  • to be told what to do in the case of an emergency

The hospice organization shall assure that:

  • all medically-related hospice care is provided in accordance with physician's orders and that a plan of care which is developed by the patient's physician and the hospice interdisciplinary group in conjunction with the patient, specifies the services to be provided and their frequency and duration
  • all medically-related personal care is provided by an appropriately trained homemaker/home health aide who is supervised by a nurse or other qualified hospice professional.

Hospice for Veterans

Missouri Hospice Veteran Partnership is part of a national network of hospice programs and the Department of Veterans' Affairs, veteran's service organizations, and the Veterans' Health Administration. The HVP is here to ensure that veteran's can access quality end-of-life services.

VA Transforms End of Life Care for Veterans

The American Veteran Demographics

  • Over 37 percent of the veteran population is 65 years old or older, compared with 13 percent of the general population. The challenge to care for these 9.5 million men and women is met through a variety of programs, including more than 137 nursing home care units in medical centers, adult day care, home health aide services and community residential care, contracts with 3,500 community nursing homes, and support to 112 state veterans homes. Additionally, VA conducts nationwide research on the causes and treatment of Alzheimer's disease and other dementias and funds 20 geriatric research centers.
  • Between 1990 and 2020, most age groups are projected to decline, with the exception of the eldest cohorts:
  • Aging Demographics of American Veterans: Overall, the veteran population is declining 1.7 percent per year. From 2000 to 2010 - veterans 65 plus decrease 9 percent from 9.3 million to 8.5 million. However, veterans 75 plus increase 12 percent from 4 million to 4.5 million, and veterans 85 plus triple from 422 thousand to 1.3 million.
  • The largest percent decline is projected for the youngest group, under age 45. This is expected in light of a relatively smaller military.
  • Those aged 65 to 84 are projected to increase between 2010 and 2015 as the Korean Conflict and Vietnam era cohorts age.
  • As the veteran population ages, the demand for geriatric and all forms of long-term care should increase significantly relative to acute care. In particular, nursing home care policies, programs, and services will require continual monitoring and assessment.
  • An increasing number of deaths from an older population means greater demands for services from NCA, including casket and cremation burials, headstones, markers and Presidential Memorial Certificates.
  • VA's health care system has grown to 163 hospitals, with at least one in each of the 48 contiguous states, Puerto Rico and the District of Columbia. VA operates more than 850 ambulatory care and community-based outpatient clinics, 137 nursing homes, 43 domiciliaries and 73 comprehensive home-care programs. VA health care facilities provide a broad spectrum of medical, surgical and rehabilitative care.
  • During the last five years, VA has put its health care facilities under 21 networks, which provide more medical services to more veterans and family members than at any time during VA's long history.
  • VA has experienced unprecedented growth in the medical system workload over the past few years. The total number of patients treated increased by over 11 percent from 2000 to 2001 – more than twice the prior year's rate of growth.
  • More than 4.2 million people received care in VA health care facilities in 2001. VA is used annually by approximately 75 percent of all disabled and low-income veterans. In 2001, VA treated about 587,000 patients in VA hospitals and contract hospitals, 87,000 in nursing homes and 45,000 in domiciliaries. VA's outpatient clinics registered approximately 42.9 million visits.

(Source: VA – visit www.va.gov/OPA/fact/docs/vafacts.htm for more information)

Also please vist We Honor Veterans.org

End of Life Care Resources

Click resource to be connected

Missouri Department of Health and Senior Services- provides oversight of hospice programs through the regulations and survey of Missouri hospice licensure and Medicare Certification.
PO Box 570
Jefferson City, MO 65109
Phone: 573-751-6336
Home Health/Hospice Hotline: 800-392-0210 (to be used for filing complaints)
Website: http://www.dhss.mo.gov/Hospice/index.html

Missouri End of Life Coalition is a statewide collaborative community based coalition to address issues facing Missourians at the end of life. The Coalition is comprised of health care providers and their assications, state regulatory agencies and consumers
1420 Hyde Park, Suite A
Jefferson City, MO 65109
Ph: 573-635-4999
Website: http://www.mo-endoflife.org/

Life Choices, is a pubication provided by Office of the Missouri Attorney General toassist with planning for end of life needs.
Office of the Missouri Attorney General
Supreme Court Building
207 W. High Street
PO Box 899
Jefferson City, MO 65102
Ph: 573-751-3321
Website: http://www.ago.mo.gov/publications/lifechoices/lifechoices.htm

Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and communty engagement initiative to improve care at the ned of life.
HelpLine: 800-658-8898
Spanish HelpLine: 877-658-8896
Email: caringinfo@nhpco.org
Website: http://www.caringinfo.org/

National Hospice and Palliative Care Association, the largest nonprofit membership organization representing hospice and palliative care programs and professional in the United States is committed to improving end of life care and expanding access to hospice care with the goals of profoundly enhancing quality of life for people dying in America and their loved ones.
1700 Diagonal Road #635
Alexandrai, VA 22314
Ph: 800-338-819
Website: http://www.nhpco.org/templates/1/homepage.cfm

Missouri Bar Association offers a wide variety of services and resources to usupport the legal work of our members and to educate the public, teachers, and the news media.
306 Monroe
PO Box 119
Jefferson City, MO 65102-0119
Ph: 573-35-4128
Website: http://www.mobar.org/

NationalAcademy of Elder Law Attorneys assist lawyers, bar organizations and others who work with older clients and their families.
1604 N Country Club road
Tucson, AZ 85716
Ph: 520-881-4005
Website: http://www.naela.com/

Children's Hospice International- CHI's ultimate goal is to so ingrain the hospice concept into pediatrics that it isn't considered a separate speciality, rather, an integral part ofhealth care for children and adolsecents.
1101 King Street, Suite 360
Alexandria, VA 22314
Ph: 703-684-0330
Website: http://www.chionline.org/

Center for Practical Bioethics raises and responds to ethical issues in health and health care.
Hartzfeld Building
111 Main Street, Suite 500
Kansas City, MO 64105-2116
Ph: 800-344-3829
Website: http://www.practicalbioethics.org/

American Hospital Association "Put It in Writing," an advance directive is your life on your terms.
Website: http://www.putitinwriting.org/putitinwriting_app/index.jsp

Missouri Pain Initiative is an independent organization dedicated to improving the lives of Missouris in pain.
Website: http://www.missouripain.org/

Aging with Dignity - "Five Wishes" document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself.
Website: http://www.agingwithdignity.org/5wishes.html


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