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What are Hospice and Palliative Care?



What is Hospice?

Hospice care brings together medical care, pain management, emotional and spiritual support for terminal patients and their families.  Most hospice care is provided where the patient already lives (a family home or nursing home); however, care is also available in hospice residences and, for acute medical needs, at inpatient facilities.  The mission of hospice staff and volunteers is to address the symptoms of a terminal illness with the intent of promoting comfort and dignity. They are experts at pain management.
Hospice will manage your loved one's pain, help you understand what he or she is going through and help you and other family members cope with your emotions. Hospice provides comfort when cure is no longer possible or curative treatment is no longer desired. Many of us are at a loss as to what we should do before and at the time of death. Hospice professionals help you get through a very difficult time and are there even after your loved one's death. For at least a year after the patient dies, the hospice will offer bereavement support to help family deal with their grief.
The unit of care in hospice is the patient and family. A customized plan of care is developed to meet their needs. It includes basic services that every hospice must offer patients and families -- these are called "core services":
  • Medical services
  • Nursing services
  • Medical social services
  • Counseling

In addition to services, the hospice plan of care specifies what the hospice will provide in terms of:
  • Medical equipment
  • Medications (there is a co-pay on all medications related to the terminal illness; up to $5 per prescription)

Based on the hospice's assessment of patient/family needs, the plan of care may offer other services:
  • Home health aide services, to assist in housekeeping and other chores related to the patient
  • Volunteers, to provide the companionship to the patient and support to the family
  • Various therapies to enhance the quality of the patient's life -- speech therapy, occupational therapy and physical therapy

For a patient to elect hospice care

  • Two physicians must certify that the patient has a terminal illness and is expected to live six months or less (one of these is the patient’s own doctor; the other is the medical director of the hospice agency)
  • the hospice must determine that care can be provided in safe surroundings
  • the patient must give "informed consent" -- that is, be aware of the goals and purposes of hospice care

What's the cost and is it covered?

Medicare and Medicaid provide a hospice benefit that covers almost all of the costs of caring for a dying person during his or her last six months of life. To qualify for the Medicare hospice benefit, a person must have:
  • Medicare Part A
  • A life expectancy of less than six months
  • A written agreement that he or she will not pursue any treatments to cure illness

The Medicare hospice benefit covers skilled nursing services, physician visits, skilled therapy (i.e. physical, speech or occupational), medical social services, nutrition counseling and bereavement counseling, most of the cost of prescription drugs for symptom control and pain relief. Short-term inpatient respite care to relieve family members from caregiving is also covered. Medicare does not cover 24-hour round-the-clock hospice care in the home. However, in a medical crisis, continuous nursing and short-term inpatient hospice care is available. Nor does Medicare cover the room and board charges for inpatient hospice care.
New Jersey Medicaid offers a Medicaid Hospice Benefit, and many private insurers and managed care companies provide a hospice benefit. Patients and families without adequate insurance coverage should talk to their hospice about a "sliding" payment schedule or charity care. This will require an assessment of family finances.

How to find a hospice provider

The Home Care & Hospice Association of NJ website includes a "Find a Provider" feature where you can search for an agency by location or by services needed.
Hospices are licensed by the NJ Department of Health. You can also search for an agency near you on the Association website, www.homecarenj.org.

What to ask

Here's a list of questions you should ask when looking for a hospice provider:
  • Are you a member of any professional organizations or are you accredited?
  • Are there certain conditions patients and families must meet to enter hospice program?
  • Are you willing to come to the home and conduct an assessment to help us understand if this is the best option for my loved one?
  • What specialized services do you offer, such as rehab therapists, family counselors, pharmacists, used equipment?
  • How often will the aide visit, to assist in patient-related chores?
  • What are your policies regarding inpatient care? With which hospital(s) do you have a contractual relationship in the event my loved one would need to go to the hospital?
  • Do you require that there be a primary family caregiver as a condition of admission?
  • What are the caregiver's responsibilities as related to the hospice?
  • What kind of emergency coverage do you offer? Who is on call? Will a nurse come quickly to the home, if needed?
  • What out-of-pocket expenses can we expect?
  • Will your staff handle all of the paperwork and billing?
  • What are your policies on the use of antibiotics, ventilators, dialysis and/or nutrients given intravenously?
  • What treatments are outside of your hospice's purview?

If you are looking for an inpatient hospice (i.e., a "hospice house"), visit with their staff and tour their facility. The journey you are about to take will leave you with a lifetime of memories. Make sure you feel very comfortable and at peace with the hospice professionals who will guide you along this path of letting go.

What Is Palliative Care?

Like hospice, palliative care engages a disciplinary team to ensure patient comfort. Unlike hospice, however, it can be used at any time in the disease process. Palliative care is usually a consultative service, meaning the palliative care team works in consultation with the patient’s own physician. Palliative care typically does not make routine visits to patients’ homes, nor provide housekeeping assistance or volunteer support.
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