If you have a severe, chronic disease or a terminal illness, your doctor, or someone else, may suggest that hospice may now be appropriate for you. This article will define hospice, how it differs from palliative care, and should help you determine if you or someone you know is eligible to receive hospice.
What is hospice?
Hospice originated in Europe and is from the term hospitality. It historically was a shelter or lodging for travelers, pilgrims, foundlings, or the destitute, and was often maintained by a monastic order.
But, it has evolved now into a program that provides palliative care to meet the physical, emotional, and spiritual needs of terminally ill patients, whether at an inpatient facility or in the patient’s home.
To palliate means to comfort. Therefore, palliative care is comfort-focused care for anyone with a chronic or incurable life-limiting disease who wants to control potential suffering. A life-limiting disease is one which, if no other problem or disease interfered with your life, would eventually cause your death; such as many cancers, Alzheimer’s Disease, end-stage heart or lung or kidney failure, ALS or Lou Gehrig’s Disease. Palliative Care can be provided for several years and even while a patient is undergoing attempted curative treatments.
Hospice is palliative care provided for the last six months of life. It is a federally funded and legally defined benefit available to all Medicare/Medicaid beneficiaries with an incurable disease and whose life expectancy, as estimated and certified by their physician, is less than six months if the disease runs its usual course. (Private insurers usually also cover it.)
What Services are provided:
- Nurse visits as often as needed (at least once per week), with on-call RN 24 hrs a day.
- Home Health Aides for personal hygiene & bed cleanliness.
- Social Worker and Chaplain visits for patient & family support.
- Volunteers available for companionship and general support.
- Bereavement support for the family for 13 months after the patient dies.
- All medications associated with the primary hospice diagnosis and for pain & symptom control.
- Relevant personal care items/needs such as a hospital bed, walker, wheelchair.
What Services are NOT covered:
- Although no specific drug or palliative treatment is excluded, most hospice organizations cannot afford to cover chemotherapy or radiotherapy.
- Live-in personal care or sitter services.
- Ambulance trips and ER care unless pre-approved by the hospice.
Who is eligible for hospice?
Anyone who has a life-limiting disease which their physician and the hospice medical director both agree will usually cause the person to die within six months.
When should a person request hospice services?
As soon as your doctor feels you are not likely going to live another six months; or, when you feel that more tests/treatments will no longer help but will only add to or cause suffering.
The sooner you enroll, the better chance you and your family have of working with a hospice team to find a level of physical and spiritual comfort which will make your final months more peaceful and dignified. Those families who do not enroll until the ‘bitter end’ tend to be less satisfied with their overall situation and care.
If you live longer than six months, do you have to leave the hospice program?
Not necessarily. Although some folks live longer than the six months, if they are still steadily deteriorating, and if the doctor still feels that death will occur in less than another six months, you may remain in hospice.
However, if you are stable and no longer declining, the hospice will usually discharge you. Then, once you begin to show evidence of decline again, they can readmit you into hospice.
FYI: patients in hospice tend to live, on average, a month longer than a similar group with the same diagnosis but who are not in hospice. This is likely because hospice focuses on comfort and stops trying to cure something incurable. [Connor S. J Pain Symptom Manage 2007]
Is hospice covered by Medicare or other health care insurance?
Yes. [see above]
Is there more than one kind of hospice?
No! This is a blatant lie marketed by some hospice agencies to attract patients to sign with their company. They say something like, “There are really two kinds of hospice: one kind is for those who aren’t ready to die yet; and the other kind is for when you are really dying. Ours is the first kind. Although you aren’t ready to die, we can still help you with your medications and other needs.”
Presumably, they do this to reassure patients that death is not yet a concern, and that they are more like a Home Health service. But, many of these types of patients are not really eligible for hospice yet; and therefore this is a fraudulent activity.
For taxation purposes there are indeed different kinds of hospice: for-profit and not-for-profit. But, for treatment purposes there is only one kind of hospice, as defined above.
Can you be in hospice and still receive treatment for another problem?
In general, yes. For example: you enter hospice with end-stage lung disease (emphysema). You fall and break your hip. You can still be admitted to the hospital and have surgery to repair the hip – if that is what you want (some people may choose not to have the surgery depending on the severity and progression of their hospice-related disease). But, if you wanted to have an elective hip replacement for your arthritis, it’s not likely you would obtain approval for this.
How is Hospice different from Home Health?
Home Health is rehabilitation oriented [trying to get you better] rather than palliative focused and does not provide drugs or supplies (except as approved by Medicare) nor the volunteer or bereavement support.
Where do you find a hospice?
Almost every county in the USA has several hospice agencies to choose from. You can look on the internet or in the phone book or ask your doctor.
How should you choose a hospice?
The National Hospice & Palliative Care Organization (NHPCO) has published a Hospice Standards of Practice and a Services Guidelines & Definitions. Before deciding, you should ask the agency you are considering, if they meet the following NHPCO minimum requirements:
* Staffing ratios – 1 RN per 8-12 patients (with 15-25 visits per week for RN’s – as well as for each of the other staff categories);
– 1 RN on-call per 60-80 patients;
– 1 social worker per 20-30 patients;
– 1 chaplain per 40-60 patients;
– 1 Home Health aide per 12-15 patients;
– 1 volunteer coordinator per 60-80 patients.
* Bereavement program – pre-death services and post-death support for 13 months minimum.
* Access to all levels of care and in all settings without regard to reasonable cost; patients cannot be discharged from hospice care because of expenses incurred.
* Continuous care provided in crisis situations.
American Hospice Foundation, www.americanhospice.org 800-347-1413
Center to Advance Palliative Care, www.getpalliativecare.org 212-201-2670
National Hospice and Palliative Care Organization, www.nhpco.org 800-658-8898
Hospice of the Shoals (NW Alabama) www.hospiceoftheshoals.org 256-767-6699