The modern hospice movement was born in England in the 1960s.  While hospice is a concept of care as opposed to any particular place, hospice care facilities do exist. The hospice concept  stresses compassionate care for the dying with special emphasis on pain management and dignity at the end of life. Hospice patients and their loved ones have come to the realization that a cure is not possible and therefore patient comfort is the appropriate focus of care. 

The first hospice "center" in the United States opened in Connecticut in 1974. Today there are more than 3000 hospice programs operating in the U.S..

The hospice concept stresses a team approach. Hospice team members work with terminally ill patients and their loved ones to help relieve distressing symptoms and pain, and to help the patient make the most of the time left.

In the United States, patients in hospice care - sometimes called comfort care - generally do not receive active chemotherapy or radiation treatment unless the treatment is primarily intended to relieve pain. The focus is on relieving physical, social and spiritual distress, and by following the lead of the patient, facilitating the exploration of the meaning and the purpose of one’s life and death.

Hospice services are all inclusive. Hospice team members include nurses; social workers; care aides; chaplains; your doctor, an oncology specialist, and/or a hospice physician; volunteers; and therapists. Hospice care can be provided in the patient’s home or in a special hospice center. 

When To Start Hospice Care 

While the appropriate time to start hospice care will differ for every patient and family, many healthcare professionals believe too many patients are offered hospice care too late.  
 
Hospice services can be most effective and supportive if the patient and family have at least 30 days of care. But sometimes it is hard to convince the doctor the time is appropriate for hospice care because some physicians want to treat their patients to the very end with chemotherapy or radiation. Sometimes the family is not ready for hospice care. They may distrust the doctor’s recommendation or believe the doctor is giving up on their loved one. But choosing hospice care is not giving up, it’s just changing emphasis.

Insurance Coverage

People are often confused about their insurance coverage for hospice care. Not all insurance companies provide benefits for hospice care, and there is a big difference in benefits between companies. First, you need to know your insurer’s hospice benefit period.  For example, Medicare has two benefit periods running 90 and 60 days.  At the beginning of a Medicare benefit period the doctor has to certify the patient is terminally ill and has less than 6 months to live.  Medicare provides two 90-day periods and an unlimited number of 60-day periods as long as the patient is considered terminally ill.  While receiving hospice benefits patients cannot receive active treatment such as surgery or chemotherapy unless the treatment is intended to help make the patient more comfortable.

Information about insurance benefits is available at www.hospicenet.org/html/medicare.html the web site for the National Hospice Organization. Their help-line phone number is 1-800-658-8898.

When choosing hospice services, there are several other questions to consider in addition to insurance coverage. Larry Beresford in his book The Hospice Handbook: A Complete Guide offers several pages of questions to ask. 

Some initial considerations include:

QUESTIONS  Is the hospice licensed and accredited? What are the admission policies, and how well do they meet your needs? Is the hospice flexible, or do they have a lot of rules that do not feel comfortable to you? What is your first impression- are they caring, patient, and competent? Can you understand what they say or do they use long medical terms? How soon can they start services? What are the specific services they offer? What determines if the patient needs inpatient care, and where is the care provided? How long do patients ordinarily stay in inpatient care? What is their relationship with your doctor? How often will they provide care in your home, for how long, and who will provide the care? What do they expect from family caregivers? Is someone on call 24 hours a day? What services don’t they provide? What are your out-of-pocket expenses? In the end what you want to ask yourself is whether the hospice is truly there to meet the needs of the patient.

Additional information about choosing a hospice can be found at: 

• www.hospicefoundation.org
• www.hospicenet.org
• www.nahc.org/HAA/home.html
  

Note For Caregivers

Caring for a family member at home is a difficult choice and can be hard on families, especially the caregiver. Hospice or home health workers come several times a week for a limited time to help with care. Unless additional help is hired most of the day-to-day care falls to the caregiver(s). Some families take turns giving care. Statistics show it is generally a daughter who becomes the primary caregiver.  One daughter may give care during the day while another daughter or daughter-in-law who works in the daytime provides care in the evening and at night. At other times it may fall to the spouse to provide almost all of the care. Whoever is the primary caregiver, it generally means there is less time for children and other responsibilities. Being a 24-hour a day, 7-days a week caregiver takes a huge toll. Even if you do not think you will need it, ask family and friends for help. The hospice team can also help find additional resources such as volunteers to help with caregiving.

As difficult as it is to care for someone who is dying it can also be very rewarding.

Hospice not only provides services to the dying, it also provides services to caregivers after the death of the patient. Most hospice services provide bereavement information, professionals who call for several months, and information about support groups.

Web-sites with information about hospice services, locating a hospice, and information for caregivers - 

• Hospice Net at: www.hospicenet.org. The site discusses what hospice is, how to find services, discusses what the dying need, how to be a supportive caregiver and finding help.
• Hospice Web at: http://www.hospiceweb.net/. The site has a search engine to locate hospice services in your state. 
• National Hospice Foundation at: www.hospicefoundation.org. The site discusses what hospice is, how to select a hospice, finding a hospice, and communicating end of life issues.
• University of Michigan at: commtechlab.msu.edu/sites/completingalife/. The site discusses end of life issues by interviewing patients and their family on topics including: loss of control, hospice, family decision-making, money matters, and medical planning, discusses pain, emotions, suffering, finding meaning, and support groups.

Written by  Linda Miller, RN, MA
Edited by Rachael Myers Lowe, cancerpage.com

This page was last edited on 04/18/2008