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10 things to remember when considering hospice care for a loved one Getty Images
VACAVILLE, CA - DECEMBER 17: (Editorial Use Only) John Gillis (the prisoner's name has been changed at his request), age 73, a hospice care patient diagnosed with terminal colon cancer, takes his daily medication in the hospice care wing of California Medical Facility (CMF) on December 17, 2013 in Vacaville, California. Gillis is serving a 30 year sentence for a crime he chose to not disclose. He was diagnosed with cancer in April 2013; doctors currently expect him to live another three months. Gillis says he has lost 70 pounds over the last six weeks, though he won't take pain medication. Gillis believes terminal patients should be allowed out of prison, stating, "there's no need for [holding terminal patients in prison] - who's a threat to society in here?" While California has a compasionate release program for terminal patients in the last six months of life, the decision is ultimately made by judges, who frequently deny the request. CMF's hospice was the first of it's kind, originally created in the 1980s during the HIV/AIDS epidemic. The program currently holds 17 beds. When a patient arrives in CMF's hospice, doctors immediately apply for compassionate release. As of June 2013, California had 133,000 prisoners, of which 15,000 were over the age of 55. The U.S. incarcerates more people than any other country in the world, and as of 2010 the national prison population was 2.26 million people. According to Human Rights Watch, between 1995 and 2010 the total number of state and federal prisoners incresased by 42%, while the number of prisoners 55-and-older skyrocketed by 282%. (Photo by Andrew Burton/Getty Images)

When a family member is dealing with a terminal illness, there are hard decisions that need to be made. Here are some important things to know as you start to explore hospice care.

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1. When is the best time to consider hospice care?

The sooner, the better. It’s never an easy topic to discuss, but it is better to talk about it far in advance. When you are dealing with decisions that have to be made under stress caused from illness, the more you can have planned out, the better.

2. How does it begin?

Hospice care typically starts when a formal request or referral is made by the patient’s doctor. Usually a hospice program representative will make an effort to visit the patient and their family within 48 hours in order to start care. Treatment can begin sooner in urgent situations.

3. What is the hospice staff’s workload?

The short answer is no. Every patient has a team assigned to them, made up of a volunteer, registered nurse, social worker, home health aide and chaplain. The team writes a care plan with the patient and family to make sure the patient gets the care he or she needs. Workloads are affected by a number of factors, but a registered nurse usually cares for about a dozen families at a time.

4. Is hospice available after normal business hours?

Hospice care is generally available on-call 24/7. Most hospices have nurses available to respond to a call for help within minutes, if necessary. Some hospice programs have chaplains and social workers on call as well.

5. How does the hospice keep the patient comfortable?

One of the biggest parts of hospice care is keeping the patient comfortable and pain-free. Hospice staff receive special training to care for all types of physical and emotional symptoms. Hospice workers will coordinate with your doctor to make sure medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan.

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6. What does the hospice volunteer do?

Volunteers serve as support staff for family members during these trying times. That can involve helping with errands, some light cooking, staying with patients to give family members a break, and offering support and companionship. Volunteers are screened, interviewed and trained to make sure they are right for this kind of work before being assigned to any team. Training can include confidentiality, working with families, listening skills, signs and symptoms of approaching death, loss and grief and bereavement support.

7. If a patient is in a nursing home, can they receive hospice care?

Yes. Hospice services can be provided to a terminally ill person wherever they live. The hospice and the nursing home will have a written agreement in place in order for the hospice to serve residents of the facility.

8. What if a patient has needs that can’t be met at home?

A growing number of hospice programs have their own facilities or arrangements with other facilities to care for patients. However, care in these settings is not covered under the Medicare or Medicaid Hospice Benefit. Part of your prior planning, well before hospice may be needed, is to see if insurance or any other payer covers this type of care or if patients/families will be responsible for payment.

9. What oversight do hospices have?

Hospice programs are required to meet state licensure requirements. In addition, hospices must comply with federal regulations in order to be approved for reimbursement under Medicare. They must periodically undergo inspection to be sure they are meeting regulatory standards in order to maintain their license to operate and the certification that permits Medicare reimbursement.

10. How can I be sure that quality care is being provided?

There are voluntary accreditations, such as the Accreditation Commission for Health Care (ACHC), that survey hospices to make sure they are providing quality care. If a potential hospice is a member in good standing, that’s a good sign. You can also contact the National Hospice and Palliative Care Organization, which has developed recommended standards entitled ‘Standards of Practice for Hospice Programs’ as one way of ensuring quality. If a hospice is adhering to these – that’s another good sign.

Joshua Trudell About the author:
Joshua Trudell is a freelance writer, photographer and graphic designer living in New Hampshire. Follow Joshua on Twitter and Facebook and check out his website.
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