Hospice ... a circle of care

by Patricia Grace

The word "hospice" stems from the Latin word "hospitium" meaning guesthouse. During the 1960's, Dame Cicely Saunders, a British physician began the modern hospice movement by establishing St. Christopher's Hospice near London. Today, hospice care provides humane and compassionate care for people in the last phases of terminal illness so that they may live their remaining life to the fullest and as pain-free as possible.

The primary focus of hospice is to maintain a quality of life through comfort, dignity and understanding. It encompasses the physical, psychological and spiritual needs of terminally ill patients, while supporting the well-being of caregivers. Whether provided in the home, hospital, long-term care facility, or anywhere else, hospice is a compassionate way to deliver care and supportive services to terminally ill patients. Services are provided on the basis of need, not the ability to pay.

Hospice & Palliative Care are they the same?

The goal of palliative care is to prevent, relieve, reduce, or soothe the symptoms of diseases or disorders. Palliative care does not try to cure disease. It is concerned with the emotional, spiritual, and practical needs of the affected person and those close to them. Palliative care is important for people who are thought to be at imminent risk of dying, those who are extremely ill, or those who are living with serious complications at the final stages of chronic diseases.
Palliative care focuses on managing symptoms, providing comfort, helping the patient complete "life business," healing relationships, and helping the family and friends who are grieving.
Hospice care is one form of palliative care with the goal to alleviate symptoms and improve quality of life. In contrast to traditional palliative care, hospice care is appropriate when there is a life expectancy of six months or less. When curative treatments are no longer working and/or a patient no longer desires to continue them, hospice becomes the care of choice. Traditional palliative care, on the other hand, can be given at any time during the course of an illness and in conjunction with curative and aggressive treatments.

While most people identify hospice with a cancer diagnosis a large portion of hospice patients suffer with COPD (Chronic obstructive pulmonary disease), heart disease (Congestive heart failure), neurological disorders (Parkinson’s disease), Alzheimer's disease/Dementia, and AIDS.

Patients and families who choose hospice are the core of the hospice team and are at the center of all decision making. A multi-disciplinary team supports the patient and the family. This team lead by a physician consists of nurses, aides, social workers, spiritual care givers, counselors, therapists and volunteers, family and the patient. All play an important role in the circle of care.

Services provided by this multi-disciplinary team include:

• Nursing services - A patient is assigned a case manager nurse who typically visits 1 to 3 days a week. Patients and their caregivers also have access to 24-hour on-call nurses.

• Physician participation - Patients are often cared for by their regular physician in cooperation with a hospice medical director.

• Medical social services – Social workers to focus on the emotional, financial and social stresses associated with terminal illness.

• Counseling Services - to include pastoral or spiritual support, bereavement counseling for family and caregivers up to one year after patient's death, and dietary services as appropriate.

• Home health aide (HHA) services - HHA help patients with their personal care and typically visit 2 to 3 times per week.

• Medications - all medications that are related to the hospice diagnosis and those that are intended to alleviate symptoms.

• Medical equipment - Equipment that is necessary for providing safe, comfortable care in the patient’s home environment is supplied by hospice. This may include a hospital bed, wheelchair, and oxygen.

• Other medical supplies may include adult diapers, bandages, and latex gloves.

• Laboratory and other diagnostic studies that are related to the terminal illness

• Therapists as appropriate, which may include: Physical therapy;Occupational therapy; Speech therapy. Additional services such as aromatherapy, pet therapy and music therapy may be available through individual hospice agencies and their volunteer and charitable donation programs.
  

Who pays for Hospice?

• Medicare - if the terminally ill individual is a Medicare beneficiary, hospice is a covered benefit under Part A. All other Medicare services continue under Parts A & B, including those of the person’s attending physician. Hospice payments do not interfere with any other Medicare payments for other illnesses, diseases or care. Hospices listed in HospiceDirectory.org will indicate if they are Medicare certified.

• Medicaid - as of 2006, 45 states plus the District of Columbia offer hospice care as a covered Medicaid benefit. In general, Medicaid hospice benefits parallel the Medicare benefit, although there may be some variations in certain states. Hospices listed in HospiceDirectory.org will indicate if they are Medicaid certified.

• Private Insurance - most insurance plans issued by employers and many managed care plans offer a hospice benefit. In most cases, the coverage is similar to the Medicare benefit, although there may be some variations between employers.

• Private Pay - if insurance coverage is unavailable or insufficient, the patient and the patient’s family can discuss private pay and payment plans.

• Tricare - is the health benefits program for military personnel and retirees. Only Medicare-certified hospices can provide for the TRICARE hospice benefit, therefore it is important that patients and family check with their Health Benefit Advisor or Health Care Finder to help them locate a qualified hospice agency.

Under Medicare law, no person may be refused hospice care due to inability to pay. Each hospice has a financial specialist on staff to answer questions about receiving financial assistance. Funds may be available from donations, gifts, grants or other community sources to help cover the costs of care.

Hospice care is covered under Medicare if:

• The patient is eligible for Medicare Hospital Insurance (Part A);

• The patient’s doctor and the hospice medical director certify that the patient is terminally ill with six months or less to live if the disease runs its expected course.

• The patient signs a statement choosing hospice care instead of standard Medicare benefits for the terminal illness;

• The patient receives care from a Medicare-approved hospice program.

Approval for hospice is required even if the agency or organization is already approved by Medicare to provide other kinds of health services. Patients can find out whether a hospice program is approved by Medicare by asking their physician or checking with the agency or organization offering the program. This information also is available from local Social Security offices.

Once hospice is initiated are other Medicare benefits available?

When Medicare beneficiaries choose hospice care, they give up the right to standard Medicare benefits only for treatment of the terminal illness. If the patient, who must have Part A in order to use the Medicare hospice benefit, also has Medicare Part B, he or she can use all appropriate Medicare Part A and Part B benefits for the treatment of health problems unrelated to the terminal illness. When standard benefits are used, the patient is responsible for Medicare’s deductible and coinsurance amounts.

What is not covered?

All services required for treatment of the terminal illness must be provided by or through the hospice. When a Medicare beneficiary chooses hospice care, Medicare will not pay for:

• Treatment for the terminal illness which is not for symptom management and pain control;

• Care given by another healthcare provider that was not arranged for by the patient’s hospice; and

• Care from another provider which duplicates care the hospice is required to provide.

To determine whether a Medicare-approved hospice program is available in your area, contact the nearest Social Security Administration office, your state or local health department, your state hospice organization, or call the National Hospice Organization HelpLine (800) 658-8899

Hospice continues after death

Bereavement is the time of mourning after a loss. The hospice care team works with surviving loved ones to help them through the grieving process. A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and on-line support, as well as through support groups. The hospice team can refer family members and care-giving friends to other medical or professional care if needed. Bereavement services are often provided for about a year after the patient's death.

Hospice care also addresses a person’s spiritual needs. Since people differ in their spiritual and religious beliefs, spiritual care is offered to meet an individual’s specific needs. It may include helping you to look at what death means to you, helping you say good-bye, or helping with a certain religious ceremony or ritual. There are many books in print to help deal with death and dying, “Facing Death, a Companion in Words and Images” by Linda Watson, Photography by Maggie Sale, is a beautiful compilation of photographs and inspirational passages that can help nourish the most wounded spirit. "Becoming Dead Right", a hospice volunteer in urban nursing homes, by author Frances Shani Parker, provides a blueprint on how we should approach the end of life.

Losing a loved one is extremely painful and brings out a variety of emotions…shock, anger, sadness and guilt. Accepting them as part of the grieving process and allowing yourself to feel what you feel is necessary for healing and embraces the spirit of hospice care.