Understanding Hospice Care

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The purpose of hospice care is to maximize the quality of life for people in the last phases of a disease that cannot be cured.

The purpose of hospice care is to maximize the quality of life for people in the last phases of a disease that cannot be cured. "Hospice is a system of care designed to relieve suffering and promote quality of life for people living with terminal illness," says James A. Tulsky, MD, director of the center for palliative care with Duke University Medical Center in Durham, North Carolina. "Its focus is to address all aspects of suffering, including physical symptoms, psychological and social distress, and spiritual pain."

According to Kimberly A. Stump-Sutliff, MSN, RN, AOCNS, associate medical editor with the American Cancer's Society in Atlanta, hospice care is appropriate when treatment can no longer help and the patient is expected to live 6 months or less. The patient, their loved ones, and the doctor decide when hospice care should begin. Generally, says Stump-Sutliff, patients in hospice care may receive treatments such as chemotherapy or radiation if their life expectancy remains at about 6 months or less and the goal of treatment is no longer cure. These treatments are given as palliative measures, or to make the patient more comfortable by controlling pain.

When considering hospice care, patients should speak to their doctors about the treatments they are receiving and those they want to continue receiving. Sloan B. Karver, MD, program leader, psychosocial and palliative care with Moffitt Cancer Center in Tampa, Florida, advises that patients should feel comfortable approaching their physician about their course of care. "A frank discussion about a treatment plan and a prognosis is very important," she said. "This discussion can help a patient decide if they are going to continue with curative treatment or move to symptom management and palliative care."

If the decision is made to move to hospice care, Dr. Karver says a patient and their loved ones should explore options in care. "The goal of hospice is to allow the patient to be comfortable and at peace," she adds. "Being a patient is very taxing, particularly someone battling cancer. With that said, the decision to begin hospice care is a very personal one and should be made carefully with a patient's family and doctor."

Care Focused on Comfort

Stump-Sutliff says hospice care is appropriate when treatment is no longer helping and symptom control is needed to keep patients comfortable and allow them to stay in control of and enjoy the remainder of their life. "This means that side effects like pain, nausea, and shortness of breath are managed, yet the patient is often able to stay at home and is alert enough to enjoy the people around them and make important decisions," she says.

Dr. Tulsky says that the goal of hospice care is to help people with serious illnesses live their lives to the fullest. "It is aggressive care focused on symptoms rather than cure," Dr. Tulsky says. "The best time to consider hospice care is when one is living with advanced life-limiting illness and cure-directed therapies are no longer working, or when the burdens of such treatment outweigh its benefits."

Hospice care is meant to decrease, relieve, and prevent suffering so that patients can take care of the business in their lives and focus their energy on their family and friends, and provides them with the resources and care they need to do so. Patients should be made aware of these goals so that they are more comfortable with the idea of hospice care. "I never give up on my patients," says Tulsky. "When I help patients transition to hospice care it is because that is the best way for me to be on their side at this difficult time in their life."

How to Find Hospice Care

Unfortunately, says Stump-Sutliff, many people are referred to hospice when it is too late to fully benefit from the services available. "This may be part of the reason why hospice is seen as giving up—too many people die soon after entering hospice care," she says. Ideally, conversations about hospice should begin when doctors become aware that they are running out of treatment options. "However, death and dying remain taboo subjects in our culture, and these conversations are extremely difficult to have—difficult for health care professionals, patients, and the patient's loved ones," adds Stump-Sutliff.

"Hospice care is available in most communities," says Stump-Sutliff. "Hospice care providers can be found through your local medical center, the phone book, your health insurance company, or through various national organizations." When choosing a place for your loved one, it is important for you to tour the facility and interview the staff, other family members, and other residents if possible.

Some national organizations you can contact for more information include:

Paying for Hospice Care

Typically, hospice care requires a referral from a physician who agrees that hospice care is appropriate for the patient. Physicians must certify that the patient's life expectancy is 6 months or less if the disease runs its expected course, and must regularly recertify patients to ensure that this condition is still being met. Still, the decision to begin hospice care is ultimately made by the patient and family. Patients can withdraw from hospice care at any time.

Medicare, Medicaid in most states, the Department of Veterans Affairs, most private insurance plans, HMOs, and other managed care organizations pay for hospice care, says Stump-Sutliff. For patients who are not in a position to cover these expenses, some hospice programs charge based on a patient's ability to pay, and there also may be contribution donations available.

Options for Hospice Care

Hospice care can be given in the patient's home, at a hospital, in a nursing home, or at a private hospice facility. "In the United States, most hospice care is given in the home," said Stump-Sutliff. "In the home, family members or other loved ones serve as the primary caregivers. It is important that the patient talk to his or her medical team about the hospice setting that best meets their needs and their family's needs. Patients and loved ones can also call or meet with hospice staff to find out more about their specific services."

Different levels of hospice care are available, depending on whether the care is provided in the home or in a facility and how much care the patient requires. While in-patient care is provided around the clock, at-home care may be arranged for a certain amount of hours per day. Hospice resources are available for the patient and family 24 hours a day, 7 days a week, however, to respond to any concerns or questions. Hospice care allows patients and their family's peace if mind that they are not alone and that assistance is available. Furthermore, hospice services provide medicines, supplies, equipment, and other services related to the patient's care.

The care through hospice is provided by a team of professionals that includes doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers, says Stump-Sutliff. Through this team, support in each service is available, and they work closely with the patient and his or her family to share their knowledge and support.

Care for the Caregivers

While taking care of a patient at home, the family and caregivers may need some time away from their responsibilities to rejuvenate or may need to travel and require temporary care for the patient. Hospice service may offer them a break through respite care, which is often offered in up to 5-day periods. The team of specialized providers will be a comfort to loved ones. Also, bereavement services are often provided for about a year after the patient's death.

Things to Consider When Choosing a Hospice Program

  • Ask whether the agency is accredited by a national organization such as The Joint Commission, state licensed, and certified by Medicare. This will ensure that the facility has met certain requirements for operation.
  • Ask for professional references, such as from local hospitals or social workers.
  • Discuss the admission procedures in detail so you understand all of the policies and conditions. Get as much documentation as possible so you can refer back to it later.
  • Find out if the program will provide a plan of care for your loved one, and make sure you have the contact information for everyone who will be involved in the care of your loved one.
  • Find out everything the agency offers, such as temporary inpatient care if you need to be away from your loved one and support for the family and caregivers.
  • Learn about the program's requirements, training, and education of their staff.
  • Ask whether the agency provides 24-hour telephone support.
  • Find out about all of the services the agency provides.
  • Be clear on what treatments the agency can provide and which ones they will not, and especially ask about any treatments currently being received.
  • Obtain all information on costs, payment policies, and financial assistance, if appropriate.