- - Tuesday, November 10, 2015

For my college minor in Ethics and Morals, my thesis was on death and dying in America. My field research involved the privilege of spending precious time with people who were terminally ill, including some who were in hospice care. Those treasured times remain at my core and it is always an honor to reflect and share some of the intimacy of care during the times they shared with me.
“Hospice” stems from the Latin word hospitium, meaning “hospitality.”

The concept dates back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. Today, hospice care refers to specialized care for the terminally ill. And The National Hospice and Palliative Care Organization states that “Hospice focuses on caring, not curing … [it provides] quality compassionate care for people facing a life-limiting illness…Support is provided to the patient’s loved ones as well.”

Dr. Nina’s What You Need To Know: About Hospice Care

How does hospice care differ from palliative care?
Palliative care is whole-person care that relieves symptoms of a disease or disorder, whether or not it can be cured. Hospice is a specific type of palliative care for people who likely have 6 months or less to live. In other words, hospice care is always palliative, but not all palliative care is hospice care.

What types of services are provided in hospice care?
The plan of care is individually developed for a patient. A team of professionals provides and coordinates a number of services to the patient and family:
• Hospice physicians have expertise in pain and symptom control at the end of life. They work with the hospice team and primary physician to determine appropriate medical interventions.
• Nurses visit patients 2-4 times a week to assess pain, symptoms, and safety. They educate the patient and family about disease progression, daily care needs, and other aspects of the overall plan of care.
• Home health aides can provide personal care, assistance with activities of daily living, companionship, and emotional support.
• Physical, occupational, speech, and massage therapists can work to maximize comfort and quality of life.
• Social workers coordinate community resources and help the patient and family with non-medical issues (financial needs, legal matters). They arrange for medical equipment, plan for the future, and assess patient and family anxiety, depression, and caregiver stress.
• Chaplains and spiritual counselors help patients and families cope with spiritual questions and concerns at the end of life (hope, meaning, despair, fears, relationship with the divine, need for forgiveness), either directly or by coordinating services with the patient’s and family’s spiritual advisors. They can also help plan and perform religious ceremonies if needed.
• Bereavement coordinators help patients and families deal with grief. Grief support services continue for at least one year after the death of a hospice patient.

Hospice staff are available by phone 24 hours a day, 7 days a week and 365 days a year. Regularly scheduled family conferences allow family members to remain informed on a patient’s condition.

Who is eligible for hospice care?

The two criteria for eligibility: a doctor must certify that the patient has an illness with an estimated life expectancy of six months and the patient must agree to hospice care. It is not necessary for a patient to have family caregivers in the home to receive hospice services.

How do I elect for hospice care?
Most patients are referred for hospice care by their physicians. If the patient’s doctor is not ready or is unwilling to make a referral, the patient or caregiver always has the right to contact a hospice organization and elect for hospice care. This is called “self referral.” The hospice medical director or another physician will evaluate and certify that the patient meets the eligibility guidelines.

Does accepting hospice care mean giving up hope?

Hospice involves acknowledging that the patient’s disease cannot be cured. It does not mean giving up hope. Instead, the focus of hope shifts towards helping the patient achieve maximum physical comfort, dignity, and peace of mind.

What are the different levels of hospice care?

Routine: Standard level of care given in the home or long-term care facility.
Inpatient care: If pain or symptoms cannot be controlled at home, the patient is taken to a hospital or other inpatient care center. The patient can return home when the symptoms are under control.
Respite care: When caregivers need time away from their caregiving responsibilities, patients can stay in a nursing home or hospice center for up to five days.
Continuous care: If the patient has a medical crisis that requires close attention, round-the-clock or inpatient care may be arranged. When the crisis has resolved, the patient returns to routine care.

How much does it cost?
Medicare, Medicaid, Veterans benefits, and most private insurance companies will cover hospice care if the patient meets eligibility. Depending on the course of illness, hospice care may extend for longer than 6 months. For patients without insurance, some hospice programs offer health care services on a sliding fee scale basis.

The impending death of a loved one is challenging and takes a toll. And the need for medical, emotional, and spiritual support during end-of-life is something many of us do not want to think about or plan for. Hospice care is something that we should be aware of, and that it is available to our loved ones and us.

Hospice organizations say it best: When faced with a terminal illness, many patients and family members tend to dwell on the imminent loss of life rather than on making the most of the life that remains. Hospice helps patients reclaim the spirit of life. It helps them understand that even though death can lead to sadness, anger and pain, it can also lead to opportunities for reminiscence, laughter, reunion and hope.

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