Hospice

1. What is hospice care?

Hospice care is a team-oriented approach to expert medical care, pain management and emotional and spiritual support tailored to those people facing a life-limiting illness.

2.  Who is appropriate for hospice care?

Any person with a life-limiting illness such as serious heart disease, metastatic cancer, long-term COPD (emphysema), and end-stage dementia, kidney or liver disease can benefit from hospice services.

3. What benefits does hospice care have to offer?

The work of hospice is conducted by a team consisting of nurses, nursing care assistants, social workers, chaplains, trained volunteers and a hospice medical director. Your doctor can recommend hospice and make a referral for hospice care. Hospice care includes control of pain and other medical problems, provision of medicines, equipment and supplies, assistance with emotional and spiritual needs, and care giver assistance and respite.

4. Where can hospice care be provided?

The primary goal of hospice care is to honor the wishes of those in their care. Hospice agencies work to help those who want to be in their own home during their illness to be able to stay at home. For those who reside in long-term care facilities, hospice team members provide care in that setting as well!

5.  How does insurance coverage for hospice work?

Many private health insurance policies include hospice care as a benefit. It is best to inquire about your particular coverage package. Medicare has included hospice as a covered benefit since 1983. Medicaid in Pennsylvania offers hospice to its recipients as well.

6.  Are there particular facts about hospice in Western Pennsylvania that I should know about?

Some states such as Florida have one hospice serving each county, but Pennsylvania does not limit the number of programs in the state. There are many hospices, large and small, community-based, hospital-based, nursing home-based, etc.  So it’s best to be an informed consumer.

Here are some questions which you can use to help you evaluate a hospice. Ask these before you choose an agency:

1. Is the hospice properly credentialed?

The hospice program should be certified and licensed by the Pennsylvania Department of Health as a hospice. The Joint Commission and similar credentialing bodies have an accreditation process for hospice. Although this is not a requirement for licensure, it can be an indication of the program’s commitment to quality.

2. What arrangements have been made to assure in-patient beds are available for back up?

Sometimes symptoms arise that can’t be managed at home and the hospice should have back up in-patient capability, either directly in their own facility or by contract. Ask if these beds are in a dedicated unit or scattered throughout a facility. Also ask whether the staff in these facilities is trained to provide expert hospice care.

3. How is the hospice service to the home organized?

In order to meet your needs, a hospice must assure you of 24/7 prompt response to phone calls, and visits to your home based on need and regardless of the time of day. You should ask about the professionals who will provide the care, know the names of the team members that serve you. Also inquire about their years of experience and certification in hospice. You should even ask what the usual caseload is for your nurse and team, and how quickly you can expect medicines, equipment and supplies to be delivered.

4. What can I expect in terms of practical help with personal care and respite?

One of the foundations of good hospice care is supplementing the efforts of the family. You should ask for regular consistent help with personal care of the patient. The hospice should also have the capacity to assure you periodic respite by assigning a volunteer or staff member to cover you for breaks in the home and for short-term—5 days—facility care to provide caregiver relief.

5. How does the hospice approach family counseling/spiritual support?

Often a life-threatening illness affects the entire family as well as the patient. The hospice team should consider the support given to family members an essential component of care. A family meeting at the start of care should be offered. If not, ask for one.

6. Just what volunteer services can I count on?

Volunteer services are actually a requirement of the hospice package of services. Volunteers are trained to be helpful to caregivers, and can offer caregiver respite particularly in the home setting. Ask if there are volunteers available to your particular part of town, and how often they can come.

7. How are bereavement services organized?

It is true that caregivers often ignore or postpone their own needs related to their loved ones’ condition. But after the death of a loved one, grieving is harder to postpone or ignore. The hospice should be in touch with you by mail and/or phone, and should provide you with phone numbers of services that can assist you in the grieving process. One very useful tool is to attend a bereavement support group to understand what others like you are experiencing. For most, grieving is a difficult but healthy natural process that comes when creating a life for yourself without your loved one.

By asking the tough questions you will likely be more satisfied with the hospice care you receive.

Maryanne Fello, Director, Forbes Hospice