By Carole Marmell, LMSW, C-SWHC

For many people, the word “hospice” means hopelessness, helplessness, giving up. In reality, hospice can also mean dignity, comfort, and peace.

When your loved one has been given a terminal diagnosis, with no available treatment and a life expectancy of six months or less, it is time for the doctor, patient, and family to have an honest discussion about end of life. If the word “hospice” surfaces, you and your loved one may have questions. This article addresses some of the most common questions.

Common Misconceptions

“Does hospice mean giving up? Not unless you believe people can live forever. We in hospice don’t require patients to give up meaningful care, but instead, to let go of treatment that may no longer be helping. Hospice is all about quality of life, for however long that may be. On that, we never give up.

“Does hospice mean that there is no hope?” Not at all. Should a cure suddenly appear, hospices are more than happy to discharge patients. Perhaps you’re hoping for a miracle. Although miracles of that magnitude are rare, there are smaller miracles, and we would never rule them out.

More realistically, if what you’re hoping for is that your loved one will not suffer…, that you will have someone to call in the middle of the night…, that there will always be medical people to back you up…, then hospice may meet your needs?. We offer physical, emotional, and spiritual support to your loved one and your family. We help you change from a “medical to a spiritual outlook” for end of life. And we walk that “difficult road” with you.

Hospice Facts

“Where is hospice care provided?” Hospice in general is not a place. It’s a service that comes to your loved one, whether at home, at a relative’s home, or in a nursing or residential care home. In some cities there are charities that support inpatient hospices; in others, this option is not available. Limited stays in an inpatient facility or 24-hour care at home may be possible for very short periods and very specific reasons.

“Who is paying for this?” Most of the time, the answer is Medicare, Medicaid, or various forms of private insurance; sometimes the hospice will accept patients with no insurance. Under Medicare, you simply sign over the hospital benefit (Part A), and all costs are covered for the hospice diagnosis. (Costs for other conditions remain under the previous coverage.) Hospice does not pay for living expenses or caregivers; caregiving is primarily up to your family or hired caregivers.

“May I continue to receive treatment?” Answers are on a case by case basis. In general, hospice services are not provided in the presence of curative treatment. But what about dialysis for a cancer patient? Or HIV medications for a patient with congestive heart failure? These are good questions for your doctor and the hospice team. If these treatments represent quality of life and comfort, and are not for the primary diagnosis, they may be justified.

Hospice Services

People: The Hospice Team

We speak of the hospice team: physician, nurse/case manager, social worker, chaplain, volunteer, home health aide, and bereavement counselor.

• The physician authorizes medications and approves the plan of care. In addition to making occasional house calls, the physician is always available to the team by phone.
• Case managers are registered nurses; one is assigned to your loved one. Your nurse visits once or twice a week, or more as needed. He or she “coordinates” with the doctor and the rest of the hospice team. In addition, the on-call nurse is available 24 hours a day, 7 days a week. If a nurse is needed in the middle of the night, you can count on a visit.
• Hospice patients have a social worker to find resources that might make life easier; to “educate” you and your loved one on the emotional work of dying, grieving, and caregiving; and to provide emotional support.
• The chaplain is available for spiritual support, if requested. Sometimes the chaplain can be simply another friendly face.
• A home health aide may be sent to help with bathing. She(sexist language)is usually assigned two to three times per week.
• Trained hospice volunteers are happy to sit with your loved one while you’re away, if you wish. Sometimes the family just wants – indeed, needs – a break, a chance to go out to dinner together, or to church.
• The bereavement or grief counselor is the person you can lean on when grief becomes a heavy burden. She is officially there for you for a year after the death, but unofficially whenever you need her.

Medications

Medications for comfort are included. For instance, if your loved one has cancer, she may need medications for pain, bowel management, anxiety, or nausea. However, unrelated medications (such as for diabetes and high blood pressure, when the hospice diagnosis is cancer) will not be covered; you may continue to buy them as you did before the start of hospice services. If you have a problem paying for them, the social worker will help you apply for assistance from the drug companies.

Equipment and Supplies

(this section should be prefaced by individualized assessment of needs and reinforce importance of providing personal care nearing end of life)

Equipment – if needed – MAY include a hospital bed, special mattress, bedside table, oxygen concentrator and portable tank, bedside commode, wheelchair, and walker. Other equipment is provided as needed. Supplies  may include diapers, bed pads, mouth swabs, and others as indicated.

Resources

• National Hospice and Palliative Care Organization
• Texas Partnership for End-of-Life Care
• Medicare Hospice Brochure

For more answers, call your local hospices with your concerns; hospice staff are happy to help as you go through this difficult time.