Hospice: It’s about how you live . . .

The previous two blog entries were focused on basic information about cancer care. One of the readers suggested that information about hospice care would be very helpful. Hospice is a topic about which everyone wonders, but is afraid to ask. Keep in mind that talking about the end of life doesn’t make it happen. This information is that which generally applies to the majority of persons. As your parish nurse, I am available to discuss individual concerns and situations.

Hospice is both a place and a treatment option. Health care in a hospital mostly involves aggressive modes of treatment intended to restore, improve, strengthen the patient to his/her prior state of health. This care regime typically includes recurrent blood tests, scans and xrays, therapies intended to cure a disease or injury. When the clinical condition of the patient does not respond to that care and there are no options for further healing, there often needs to be an alternate type of care for the patient. This is where hospice comes in, to offer comfort and support for the remainder of the patient’s life.

The treatment mode called hospice care, or palliative care, is health care given when there is no cure. This is sometimes called “comfort care.” Hospice care is begun when someone has an illness or injury for which medical treatments are no longer effective. There are residential hospice facilities, as well as certain rooms designated in a hospital or a general long term care facility as hospice beds. There is hospice care in the patient’s home, with home health care agency staff providing intermittent care. Medical staff will help the patient and family determine what care is most appropriate, while acknowledging that even the best of plans may have to be modified as the illness progresses.

Hospice focuses on caring, not curing, and in most cases care is provided in the patient’s home – many have voiced their preference to “die in my own bed.” However, at times the typical progress of the person’s disease may be such that special sorts of care are most easily managed in a facility other than one’s home. Hospice services are available to patients of any age, religion, race or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs and other managed care organizations. Hospice facilities must meet the federal regulatory standards and requirements for licensure to operate their business.

The hospice care team includes the patient’s personal physician, hospice physician/medical director, nurses, home health aides, social workers, clergy, trained volunteers, and occasionally speech, physical, and occupational therapists. The more common services provided by the hospice team include:

  •  Manage pain and other physical symptoms;
  • Assist the patient with emotional, psychosocial and spiritual aspects of dying;
  • Provide medications, medical supplies and equipment;
  • Coach the family on how to care for the patient;
  • Deliver therapy care when needed;
  •  Make available short-term in-patient care when needed for additional pain management or to provide respite for family caregivers;
  • Provide bereavement care and counseling to surviving family and friends.

While remaining at home for hospice care sounds perfectly ideal, there are some things to consider. The family members living at home, or coming in frequently, will find that they need to keep up with doing the household tasks of cooking, cleaning and laundry. Taking care of a loved one is emotionally draining, and often energy wears down in ways that are not typical. When the patient is restless or wakeful at night, the family caregiver may miss much-needed sleep. The advantage of having the care provided in a residential hospice is that they have 24-hour staff members who do all the household tasks, as well as care for the patient – and can provide hot meals, coffee and cookies to families and visitors. Hospice care suites include sleeping options for family members, though there are times when family members need a night at home to benefit from some restorative sleep time.

It is important to say that hospice care is not limited to six months of service. The Medicare hospice benefit requires that a terminally-ill patient have a prognosis of six months or less. There is not a six-month limit to hospice care services. (Read that sentence again please; it is very often mis-quoted.) Hospice eligibility requirements should not be confused with length of care. A patient in the final phase of life may receive hospice care for as long as necessary when a physician certifies that the patient continues to meet elibility requirements. Under the Medicare Hospice Benefit, two 90-day periods of care (six months) are followed by an unlimited number of 60-day periods of care service.

A closing prayer: Loving God, your heart overflows with compassion for your whole creation. Pour out your spirit on all people living with illness for which there is no cure, and on their families and loved ones. Help them to know that you claim them as your own, deliver them from fear and pain, and assist us in ministering to their needs; for the sake of Jesus Christ, our healer and Lord. Amen.