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Hospice and End of Life Care

Background

The modern hospice movement started in the 1960s, when Dr. Cicely Saunders established St. Christopher's Hospice in London . Her team approach to care giving was one of the first to use modern pain management techniques, and it rapidly became popular.

What is Hospice ?

Hospice is a special kind of care that offers comfort and support to people living with a terminal illness. Traditionally, hospice services are available to people who can no longer benefit from curative treatment. Life expectancy for these individuals is generally six months or less. Individuals who receive hospice care do not need to be confined to their homes, and are encouraged to continue to live their life as fully as possible. Hospice provides physical, psychological, emotional, spiritual and bereavement care.

The goal of hospice care is to relieve pain and suffering, allowing people to live the remainder of their life in comfort and with dignity. The recipients of hospice care include family members or care givers, as well as the patient. Hospice care emphasizes quality of life rather than length of life, and regards dying as a normal and natural process. Hospice seeks neither to hasten death nor artificially prolong life, and interventions focus on palliative or comfort measures.

What is palliative care?

 Palliative care strives to relieve pain and suffering of the terminally ill patient. It does not mean that life prolonging treatments are terminated but that the focus of care shifts from cure to pain and symptom management. Palliative care can occur in the home, hospice, or hospital.

“Palliative care is an exercise in forward planning and
prevention rather than a model of crisis intervention.”

Dr. Ronald S. Schonwetter

What is bereavement support?

Bereavement support is help in coping with the loss of a loved one. Grieving is a psychological process that nursing home staff members, family members and friends must go through when a person they love or take care of dies. It is necessary to feel the pain of grief in order to become whole again.

What is a hospice team?

The Hospice team includes physicians, nurses, dietitians, social workers, pharmacists, home health aides, chaplains, trained volunteers, the patient and family. A team of professionals and trained volunteers provide hospice services to patients and their family members.

 What specific assistance does hospice provide home-based patients?

Hospice patients are cared for by a team of physicians, nurses, dietitians, social workers, counselors, and hospice certified nursing assistants, clergy, therapists, and volunteers - and each provides assistance based on his or her own area of expertise. In addition, hospices provide medications, supplies, equipment, and hospital services, related to the terminal illness.

Is hospice care available to nursing home residents?

Yes. The services of hospice care programs are provided wherever patients are spending their final days, whether at home, in a family member's home, or in a nursing home. The hospice team helps patients live out their final days with dignity and with as much physical comfort as possible. The hospice team provides support, education and counseling to family members, nursing home staff and other nursing home residents who know the patient.

What is the role of the Registered Dietitian?

 Registered dietitians (RDs) work collaboratively to make nutrition, hydration, and feeding recommendations. RDs assess patients’ nutritional needs, offer nutritional counseling, and provide meals that reduce constipation and other side effects of medication and treatment. Dietitians also encourage patients and families to suggest or supply their own favorite meals such a mom’s home-cooked chicken or dad’s special cake. People will generally eat more if they can eat familiar favorites and those they regard as comfort foods. RDs also help educate patients and their families about end of life care choices. RDs are a valuable asset to an institution’s ethics committee. When facing difficult decisions it is often reassuring for families to hear similar messages from multiple care team members. Often the RDs familiarity with practical aspects food and fluid at the end of life including chewing and swallowing problems and cessation of thirst and hunger make them best able to address families concerns and answer questions. RDs may find that they need to answer the same question many times. The complexity of the issue demands that topics be approached and sorted through from multiple perspectives, always assuring that consistent answers are provided so that patients and their families feel secure in making sensitive end of life food and fluid decisions.

Hospice patient demographics

About 885,000 patients and families were admitted into the 3200 US hospice programs in 2002 according to the National Hospice and Palliative Care Organization. Hospice deaths account for 1 in every 4 people who died in the US of all causes. Hospice patients are:

  • 54% female;
  • 63% 75 years or older;
  • 81% Caucasian,
  • 9% Black or African American,
  • 4.3% Hispanic or Latino,
  • 0.9% Asian or Hawaiian/Pacific Islander, and
  • 4.6% not identified in any of the above categories .

The top 5 non-cancerous causes of death in hospice include:

  • 11% end stage heart disease,
  • 10% dementia,
  • 7% lung disease,
  • 3% end-stage kidney disease,
  • 2% end-stage liver disease and
  • other illnesses include AIDS, Parkinson’s, and/or Alzheimer’s. ( 1)

The Medicare program identified 2,265 hospices as of January 2002. There are also an estimated 200 volunteer hospices in the United States . As of February 1998, 44 states licensed hospices. In 1998, hospices served 579,801 Medicare patients throughout the United States . Less is known about the hospices that do not participate in the Medicare or Medicaid programs, as the rules and regulations for licensure vary by state.

What are the eligibility criteria for Medicare ?

Hospice care is covered under Medicare Part A - Hospital Insurance. The following criteria must be met for Medicare hospice benefits eligibility ( 2):

  • Eligible for Medicare Part A (Hospital Insurance),
  • Doctor and the hospice medical director certify terminal illness, with less than six months to live,
  • Signed statement choosing hospice care instead of routine Medicare covered benefits for terminal illness treatment, and
  • Care received from a Medicare-approved hospice program.

If patient is Medicare eligible, are there any additional expenses to be paid?

Medicare covers all services and supplies for the hospice patient related to the terminal illness. In some hospices, the patient may be required to pay a 5% or $5 “co-payment” for medication and a 5% co-payment for respite care. You should find out about any co-payment when selecting a hospice.

What is not covered by Medicare?

Medicare does not pay for any of the following (2):

  • Treatment intended to cure a terminal illness. Hospice patients always have the right to stop getting hospice care and receive the Medicare coverage prior to electing hospice.
  • Care from another hospice that wasn’t set up by your hospice. You must get hospice care from the hospice program you chose. You cannot get hospice care from another hospice program unless you officially change your hospice program.
  • Care from another provider that is the same care that you must get from your hospice.
  • All care that you get for your terminal illness must be given by your hospice team. You cannot get the same type of care from a different provider unless you change your hospice provider.
  • Room and board aren’t covered by Medicare if you get hospice care in your home, or if you live in a nursing home or a hospice residential facility. In certain cases, depending on the level of services provided, the costs for room and board are included in Medicare’s payment (for example, when a hospice patient is admitted to a hospital or skilled nursing facility for the inpatient or respite level of care).

How is Hospice funded?

Medicare pays the hospice program a per diem (daily) rate that is intended to cover virtually all expenses related to addressing the patient’s terminal illness. Because patients require differing intensities of care during the course of their disease, the Medicare Hospice Benefit affords patients four levels of care to meet needs:

  • Routine Home Care,
  • Continuous Home Care,
  • Inpatient Respite Care, and
  • General Inpatient Care.

Ninety-six percent of hospice care is provided at the routine home care level, which is reimbursed at approximately $114 per day. Hospices that are Medicare-certified must offer all services required to palliate the terminal illness, even if the patient is not covered by Medicare and does not have the ability to pay.

What is the role of food and fluids at the end of life?

  • The importance of food and nutrition at the end of life

In the last stages of the dying process, the purpose of food is enjoyment more than nutrition. One dying patient in a nursing facility was referred to the dietitian because she requested a rum and coke from the hospice team. Her physician refused to provide an order. To meet the needs of the patient and to satisfy the physician, the dietitian used rum extract in the coke. The patient enjoyed the taste and the physician was satisfied.

  • Physiological changes

Too much food and fluids can impose a physiological burden and negatively impact palliative care at the end of life. Food is the fuel that the body needs to restore energy and rebuild body tissues. When the body is no longer repairing and restoring, the amount of food needed is sharply decreased.

  • Nutrition related palliative care

Patient choice and informed decisions are of the utmost importance. Though it is important to identify malnutrition in palliative care, reversing that malnutrition may not be possible for the patient at the end of life. Traditional nutrition goals shift to be more in line with the overall philosophy of palliative care. The education provided to healthcare professionals when appetite is an issue is to either offer between meal nourishments or to provide frequent, small feedings. In the case of the dying patient, neither may be appropriate. Supplements are most often liquid and may deprive the patient of various textures and tastes but are appreciated by many patients and caregivers. Family caregivers have been known to unnecessarily awaken a sleeping patient so that they can fit in the recommended number of small meals. When a patient is pressured to eat, family friction and distress may result. It is important to serve foods requested by the patient and to provide it in small portions. Some cognitively intact patients may refuse food and fluids; this decision must be respected.

  • Artificial nutrition and hydration

Artificial nutrition is defined as the provision of fluids through an intravenous access to a vein. The healthcare professional has the obligation to inform and support those making the decision about artificial nutrition and hydration. The ethical matters involved in these decisions include the person’s right to refuse any unwanted medical interventions and the requirement that the healthcare professional tell the truth to the patient and do no harm.

Stopping foods and fluids at the end-of-life

 A 2003 study published in the New England Journal of Medicine surveyed 307 hospice nurses (3). Overall, the nurses rated quality of death of those patients who refused food and fluids at the end-of-life good, with an average score of 7 on a scale of 0-9 where 0 is ‘a very bad death’ and 9 is ‘a very good death.’ According to the nurses, the most important factor in stopping food and fluids is the patient’s readiness to die.

Little research has been conducted on the cessation of foods and fluids in the end-of-life. Less is known about the experience of dying among patients who cease food and fluids. However, Ganzini et al found that “the nurses rated the last two weeks of life as peaceful, with low levels of pain and suffering” (3).

American Dietetic Association Position Statement

“It is the position of the American Dietetic Association that the development of clinical and ethical criteria for the nutrition and hydration of persons through the life span should be established by members of the health care team. Registered dietitians should work collaboratively to make nutrition, hydration, and feeding recommendations in individual cases. Registered dietitians have an active role in determining the nutrition and hydration requirements for individuals throughout the life span.”(4)

 

Hospice Terminology

The following is a list of commonly used terminology in hospice and palliative care (5-7):

Advance Directive - written documents designed to allow competent patients the opportunity to guide future health care decisions in the event that they are unable to participate directly in medical decision making. Laws about advance directives are different in each state.

Bereavement - the period of time, usually occurring within the first year after the loss, during which a person or group of people experiences, responds emotionally to and adjusts to the loss by death of another person.

Grief - the response to loss that often occurs in stages of varying length. Stages are differentiated by changes in feeling, thought, and behavior.

Hospice - a public agency or private organization or subdivision of either of these that is primarily engaged in providing care to terminally ill individuals and their families.

Hospice Care – a combination of home and inpatient care of the terminally ill that combines medical, spiritual bereavement and psychosocial services. It is designed to help both the patient and the family. It emphasizes pain control, symptom management, and emotional support rather than life-sustaining measures.

Living Will - documents a person's wishes concerning treatment when those wishes can no longer be personally communicated. It takes effect only when the patient is incapacitated and can no longer express his or her wishes.

Palliative Treatment - treatment and comfort measures directed toward relief of symptoms, and pain management rather than treatment to cure.

Palliative Care - care given to the terminally ill that focuses on relief of symptoms and pain management.

Spiritual - patients and families' beliefs and practices as they relate to the meaning of their life, death, and their connectedness to humanity which may or may not be of a religious nature.

Terminal Illness - a state of disease characterized by a progressive deterioration with impairment of function which without aggressive intervention, survival is anticipated to be six months or less.

Terminal Sedation – patient is sedated to unconsciousness, through the administration of barbiturates. Food and fluids are stopped.

Persistent Vegetative State - refers to a condition in which individuals have lost cognitive neurological function and awareness of the environment but retain non-cognitive function and a preserved sleep-wake cycle.

Nutrition Experts in Hospice

Barbara H. Allari, RD , Hospice and Palliative Care Nutrition Counselor employed by three Los Angeles, California hospice programs – Trinity Care Hospice, Kaiser-Sunset Hospice and Roze Room Hospice .

 “To accept a situation where treatment is directed to the relief of symptoms and the alleviation of general distress will no longer mean an implicit “there is nothing more that we can do” but an explicit “everything possible is being done.” (8)

Barbara Allari

 Charlette Gallagher-Allred, PhD, RD, LD, HomeReach Hospice, Columbus , Ohio .

“’To feed or not to feed’, as with other methods of treatment, requires that those involved with palliative care ask the underlying questions, ‘What good will it accomplish for the patient?’ and ‘Do the benefits of nutrition support outweigh the burdens?’. To fully appreciate the meaning food has in the lives of our patients, we would do well to identify the meaning food has in our own lives.” (9)

Charlette Gallagher-Allred

National Hospice Organizations

Professional Resources

Hospice Hotlines

  • Choices in Dying: 800-989-9455
  • Legal Services for the Elderly: 212-391-0120
  • National Association for Home Care: 202-547-7424
  • Nurse Association of America : 800-426-2547
  • Partnership for Caring: 800-989-9455

References:

  • Hospice Facts and Figures. Available at: www.nhpco.org/files/public/Hospice_Facts_110104.pdf
  • Medicare Hospice Benefits. Available at: www.medicare.gov/publications/pubs/pdf/02154.pdf
  • Ganzini L, Gou ER, Miller LL, Harvath TA, Jackson A, Delorit MA. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. N Eng J Med. 2003;349:359-365. (7/24)
  • Maillet JO, Potter RL, Heller L. Ethical and legal issues in nutrition, hydration and feeding. J Am Diet Assoc. 2002;102:716-726.
    Available at: www.eatright.org/Public/NutritionInformation/92_adar0502.cfm
  • Ethics in Medicine. Available at: http://eduserv.hscer.washington.edu/bioethics/topics/advdir.html
  • The Living Will: A Guide to Health Care Decision Making. Available at: http://wings.buffalo.edu/faculty/research/bioethics/lwill.html
  • Key Hospice Terminology. Available at: www.carefordying.org/mainwebsite_html/careOptions/terminology.htm
  • Allari BH. When the ordinary becomes the extraordinary: food and fluids at the end of life. Generations: J Am Soc Aging. 2004; 28(3): 86-91.
  • Gallagher-Allred CR. Nutritional Care of the Terminally Ill. Aspen Publishers, Inc., Rockville , MD. 1989.
  • After Terri Schiavo—One Dietitian’s Reflections on Euthanasia by Feeding Tube Removal. Today’s Dietitian e-newsletter July, 2005. Available at: http://www.todaysdietitian.com/
  • Bloche MG. Managing conflict at the end of life. N Engl J Med. 2005. 352;23:2371-73

Compiled by the National Resource Center on Nutrition, Physical Activity & Aging,
Florida International University, Miami, FL
Contact: nutritionandaging@fiu.edu

June 2005

This project is supported, in part, by a grant from the Administration on Aging, Department of Health and Human Services (DHHS). Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, reflect official DHHS policy.


Posted on: 06/22/05
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National Resource Center on Nutrition, Physical Activity & Aging
| Florida International University, OE 200, Miami, FL 33199
Phone: 305-348-1517 | Fax: 305-348-1518 | E-mail:
nutritionandaging@fiu.edu

This website is supported, in part, by a grant from the Administration on Aging, Department of Health and Human
Services (DHHS). Grantees undertaking projects under government sponsorship are encouraged to express freely their
findings and conclusions. Points of view or opinions do not, therefore, reflect official DHHS policy.