Neuroblastoma Hospice

What is Hospice?

Hospice, in the earliest days, was a concept rooted in the centuries-old idea of offering a place of shelter and rest, or "hospitality" to weary and sick travelers on a long journey. In 1967, Dame Cicely Saunders at St. Christopher's Hospice in London first applied the term "hospice" to specialized care for dying patients. Today, hospice care provides humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.

Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and does not hasten or postpone death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered care -- it involves the patient and the family in making decisions. Care is provided for the patient and family 24 hours a day, 7 days a week. Hospice care can be given in the patient's home, a hospital, nursing home, or private hospice facility. Most hospice care in the United States is given in the home, with a family member or members serving as the main hands-on caregiver.

Hospice care is meant for the time when cancer treatment can no longer help you, and you are expected to live 6 months or less. Hospice gives you palliative care, which is treatment to help relieve disease-related symptoms, but not cure the disease; its main purpose is to improve your quality of life. You, your family, and your doctor decide together when hospice care should begin.

One of the problems with hospice is that it is often not started soon enough. Sometimes the doctor, patient, or family member will resist hospice because he or she thinks it means you're giving up, or that there's no hope. This is not true. If you get better or the cancer goes into remission, you can be taken out of the hospice program and go into active cancer treatment. You can go back to hospice care at a later time, if needed. The hope that hospice brings is the hope of a quality life, making the best of each day during the last stages of advanced illness.

Hospice care services

There are many things about hospice care that set it apart from other types of health care.

A team of professionals
In most cases, an interdisciplinary health care team manages hospice care. This means that many interacting disciplines work together to care for the patient. Doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers care for you. Each of these people offers support based on their special areas of expertise. Together, they then give you and your loved ones complete palliative care aimed at relieving symptoms and giving social, emotional, and spiritual support.

Pain and symptom control
The goal of pain and symptom control is to help you be comfortable while allowing you to stay in control of and enjoy your life. This means that side effects are managed to make sure that you are as free of pain and symptoms as possible, yet still alert enough to enjoy the people around you and make important decisions.

Spiritual care
Hospice care also tends to your spiritual needs. Since people differ in their spiritual needs and religious beliefs, spiritual care is set up to meet your 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.

Home care and inpatient care
Although hospice care can be centered in the home, you may need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. The hospice can arrange for inpatient care and will stay involved in your care and with your family. You can go back to in-home care when you and your family are ready.

Respite care
While you are in hospice, your family and caregivers may need some time away.. Hospice service may offer them a break through respite care, which is often offered in up to 5-day periods. During this time you will be cared for either in the hospice facility or in beds that are set aside for this in nursing homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get much-needed rest at home while you are cared for in an inpatient setting.

Family conferences
Through regularly scheduled family conferences, often led by the hospice nurse or social worker, family members can stay informed about your condition and what to expect. Family conferences also give you all a chance to share feelings, talk about expectations, and learn about death and the process of dying. Family members can find great support and stress relief through family conferences. Conferences may also be done informally on a daily basis as the nurse or nursing assistant talks with you and your caregivers during their routine visits.

Bereavement care
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/or letter contact, 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. To learn more on this topic, please see the American Cancer Society document, Coping with the Loss of a Loved One, and Helping Children When a Family Member Has Cancer: Bereavement Information for Children and Parents.

Hospice volunteers play an important role in planning and giving hospice care in the United States. Volunteers may be health professionals or lay people who provide services that range from hands-on care to working in the hospice office or fundraising.

Staff support
Hospice care staff members are kind and caring. They communicate well, are good listeners, and are interested in working with families who are coping with a life-threatening illness. They are usually specially trained in the unique issues surrounding death and dying. Yet, because the work can be emotionally draining, it is very important that support is available to help the staff with their own grief and stress. Ongoing education about the dying process is also an important part of staff support.

Coordination of care
The interdisciplinary team coordinates and supervises all care 7 days a week, 24 hours a day. This team is responsible for making sure that all involved services share information. This may include the inpatient facility, the home care agency, the doctor, and other community professionals, such as pharmacists, clergy, and funeral directors. You and your caregivers are encouraged to contact your hospice team if you are having a problem, any time of the day or night. There is always someone on call to help you with whatever may arise. Hospice care assures you and your family that you are not alone and help can be reached at any time.

Hospice Care Settings

Hospice care is defined not only by the services and care provided, but also by the setting in which these services are delivered. Hospice care may be provided in your home or in a special facility.

Most cancer patients choose to get hospice care at home. In fact, more than 90% of the hospice services provided in this country are based in patients' homes.

Before making a decision about the type of program that is best for you and your family, it is important to know all your options and what each requires. Your doctor, hospital social worker, or discharge planner can be very helpful in deciding which program is best for you and your family.

Home Hospice Care
Many, if not all, of the home health agencies in your community, as well as independently owned hospice programs, will offer home hospice services. Although a nurse, doctor, and other professionals staff the home hospice program, the primary caregiver is the key team member. The primary caregiver is usually a family member or friend who is responsible for around-the-clock supervision of the patient. This person is with the patient most of the time and is trained by the nurse to provide much of the hands-on care.

It is important to know that home hospice may require that someone be home with you at all times. This may be a problem if you live alone, or if your partner or adult children have full-time jobs. But creative scheduling and good team work among your friends and loved ones can overcome this problem. Members of the hospice staff will visit regularly to check on you and your family and give needed care and services.

Care begins when you are admitted to the program, which generally means that a hospice team member visits the home to learn about your situation and needs. Return visits are set up so that your needs can be re-evaluated regularly. To handle around-the-clock patient needs or crises, home hospice programs have an on-call nurse who answers phone calls day and night, makes home visits, or sends the team member you may need between scheduled visits. Medicare-certified hospices must provide nursing, pharmacy, and doctor services around the clock.

Hospital-based Hospices
Hospitals that treat seriously ill patients often have a hospice program. This arrangement allows patients and their families easy access to support services and health care professionals. Some hospitals have a special hospice unit, while others use a hospice team of caregivers who visit patients with advanced disease on any nursing unit. In other hospitals, the staff on the patient's unit will act as the hospice team.

Long-term Care Facility-based Hospices
Many nursing homes and other long-term care facilities have small hospice units. They may have a specially trained nursing staff to care for hospice patients, or they may make arrangements with home health agencies or independent community-based hospices to provide care. This can be a good option for patients who want hospice care but do not have primary caregivers to take care of them at home.

Independently Owned Hospices
Many communities have free-standing, independently owned hospices that feature inpatient care buildings as well as home care hospice services. As with long-term care facility hospice programs, the free-standing hospice can benefit patients who do not have primary caregivers available at home.

Source: The American Cancer Society,


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