CARE AND COMPASSION . . . ALWAYS. To think that you or someone you love is dying can be devastating. It may seem that all is hopeless, that there is nothing more you can do. However, that is not true. There is much you can do. Hospice is available to care for you or your loved one so that your remaining days are comfortable and filled with the love and support of family and friends.

Hospice care:
• Emphasizes living one’s remaining days as fully as possible.
• Affirms life and neither hastens nor postpones death.
• Provides relief from the physical and emotional pain that often accompanies a terminal illness.
• Cares for the whole person and family.
• Provides grief support to the surviving family.

Hospice care is rooted in the centuries-old tradition of preparing gifts for those embarking on a long journey.

The Hospice Organization and Palliative Experts (HOPE) of Wisconsin began in 1987. The original name of the organization was the Hospice Organization of Wisconsin (HOW) but was changed to its present name by vote of the membership in 2000. We are the membership organization representing the licensed hospices in Wisconsin. HOPE is a 501(C)(3) organization.

Is to provide education, legislative influence, and partnership opportunities to all individuals and organizations in the state of Wisconsin who influence quality end-of-life decisions and care to strengthen the provision of hospice and palliative care.

A quality end of life will become a reality for all Wisconsin residents.
The following are some common questions people have.

Hospice care is considered to be the model for quality, compassionate care at the end of life. It involves a team-oriented approach to expert medical care, pain management, and emotional spiritual support expressly tailored to the patient’s needs and wishes. Support is extended to the patient’s family and loved ones as well. At the center of hospice is the belief that each of us has the right to die pain-free and with dignity and that our families will receive the necessary support to allow us to do so. The focus is on caring (palliative), not curing. Hospice care is provided in the patient’s home—freestanding hospice facilities, hospitals, nursing homes, assisted living facilities — wherever patients call home. Hospice services are available to patients of any age, religion, race, marital status, gender, or illness. Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff are on-call 24 hours a day, seven days a week.

The hospice team is composed of everyone who is concerned with the patient’s care. The team develops a care plan that meets each patient’s individual needs for pain management and symptom control. The patient and family (may include relatives, friends, neighbors, or extended family) are at the core of the hospice team and are at the center of all decision-making. Other team members and their functions are:
• The patient’s personal physician.
• Hospice medical director consults the hospice team and the patient’s doctor.
• A hospice nurse coordinates the care to ensure the patient’s comfort.
• Social worker helps the family to coordinate services and identify community resources.
• Spiritual caregiver provides spiritual support and works with the patient’s community of faith.
• Home health aide assists with bathing and other personal cares.
• Trained volunteers provide a variety of services, including companionship and respite care, to give the family a rest.
• Speech, physical, nutritional, and occupational therapists are available if needed.
• Grief counselor provides support for your family.

Hospice care starts as soon as a formal request is made. This can be a referral by the patient’s doctor or it can be a request from the patient or family member. If at all possible, a hospice staff person will visit the patient on the day the referral is made. Usually care is ready to begin within a day or two of a referral. However, in an urgent situation, service may begin sooner.

In consultation with the patient’s primary doctor, the hospice staff will determine how much he or she will be involved in the patient’s care after hospice care begins. Most often, hospice patients can choose to have their personal doctor involved in the medical care. Both the patient’s physician and the hospice medical director may work together to coordinate the patient’s medical care, especially when symptoms are difficult to manage. Regardless, a physician’s involvement is important to ensure quality hospice care. The hospice medical director is also available to answer questions the patient or family may have regarding hospice medical care.

In Wisconsin, hospice care can only be provided by licensed hospices. They are highly regulated by both the federal and state government as well as by professional organizations. These organizations survey hospices to see whether they are providing care that meets defined standards. These reviews consider the customary practices of the hospice, such as policies and procedures, medical records, personal records, evaluation studies, and in many cases also include visits to patients and families currently under care of the hospices.

Medicare, private health insurance, Medicaid, and HIRSP cover hospice care for patients who meet eligibility criteria. As with any health care program, there may be co-pays and deductibles that families pay in individual cases. While each hospice has its own policies concerning payment for care, it is a tradition of hospice care to offer services based upon need, rather than ability to pay.

To find the hospice nearest you, call the HOPE toll-free number: 1-800-210-0220. Most are also listed under Hospice in the yellow pages of the phone book. You can also locate the hospice nearest you with information about how to contact them by clicking on Hospices of Wisconsin.

Wisconsin is one of the leaders in the development of Hospice Houses. There are currently eight throughout the state with more in planning stages. These are residential facilities available to patients who can no longer reside in a private residence. Hospice staff can help in determining if a particular insurance policy covers this type of care and how the hospice arranges for payment.

They are documents also known as a Durable Power of Attorney for Health Care and Living Will. Although a patient is not required to have them to receive hospice care, they are the documents that help the family make decisions according to the patient’s wishes. Competent adults have the right to make their own health care decisions, including the right to decide what kind of medical care to accept, reject, or discontinue, and to so instruct their health care agents by use of these documents.

For more complete information, including where to obtain the forms, click on Advance Directives on this website.

 

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Illustrations by Robin Chapman