Ask CancerCare

A. The focus of hospice is on the care and comfort of the individual and his or her family, not cure. Usually hospice care is provided in the patient's home, but hospice services are also provided in hospitals, nursing homes and hospice centers. The hospice team can include: the patient's attending physician or a hospice doctor, social workers, nurses, home health aides, medical specialists, counselors, clergy and volunteers. The goals of hospice care include managing any pain or symptoms that arise and providing emotional, spiritual and practical support to the patient and family.

When hospice is needed, you should be able to get up to 20 hours of home health aide services through hospice care (depending on the state where you live, assistance can also be called CNA hours). A common dilemma is figuring out how to supplement the services hospice offers if additional hours are needed. While there is not an easy answer, I have a few suggestions:

• Ask if the hospice has volunteers who can visit a few times a week as they often have volunteer programs.
• If you are connected with a faith community, ask if they have staff or volunteers from the congregation who could help.
• Check with the home care agency that your hospice uses to see what additional hours might cost. For additional information, see Hiring In-Home Help.
• Inquire through the hospice agency for recommendations of private-hire caregivers who have cared for other hospice patients and are experienced with providing this type of supplemental care.
• Remember that if your needs increase, hospice can arrange short-term in-patient stays until your needs decrease and you can return home.
• I know you mentioned not having family close by, but for others who might, family members could explore Family Medical Leave Act (FMLA) options.

For additional information about hospice care, visit the National Hospice and Palliative Care Organization's website, Caring Connections.

Let me respond to these two questions together because the answers are actually related. A distinction needs to be made between a referral to palliative care and a referral to a pain specialist. It is important to remember that a palliative care program is multidisciplinary team care, usually consisting of a physician, nurse, social worker and pastoral counselor. Other disciplines that may be part of a palliative care team are nurse practitioners, physician assistants, psychiatrists, psychologists, nutritionists and case managers. The medical staff of the palliative care team are trained, and often licensed, in assessing and treating physical pain throughout the course of illness. At this point in time, receiving palliative care is not contingent on insurance and the palliative medical team cannot bill insurance for the services.

There are some hospital and clinics that have separate pain management specialists who are not part of or associated with palliative care. As with the palliative care medical team, these are also specialists who have been trained and licensed in pain management. Often these pain specialists are anesthesiologists if they are physicians or nurse anesthetists if they are nurses. These specialists can, for the most part, bill for their pain management expertise.

Some hospital-based palliative care programs are now joined with pain programs. The result is a singular program referred to as "Pain and Palliative Care". The combining of these two programs into one program accomplishes a few things. It allows the palliative care team to utilize their pain management expertise in a broader patient population and gives them the opportunity to bill for their pain management services, thus subsidizing the palliative care program.

In response to the second question, your father might have received a referral to either an individual pain specialist or a Pain and Palliative Care program. Either way, it is important that your father comply with the referral for his own physical and emotional well-being. Pain associated with cancer is complicated because the causes of pain can be variable and change from day to day. As for his resistance, it might be helpful for you to explain that pain management is an important part of his overall treatment program. You can also explore his concerns and provide information that might help clarify. For more information, please read our publications:

• Opening the Doors to Effective Pain Management
• Controlling Cancer Pain

The goal of hospice care is to provide pain and symptom management, while also focusing on the person's quality of life. The hospice team includes physicians, nurses, social workers, pastoral counselors, home attendants and volunteers and they explore the medical, emotional, spiritual and psychological impact of illness and possible death with the patient as well as his/her loved ones. The team also provides continued supportive services to the family in the form of grief and bereavement counseling when needed. The majority of hospice care in the United States is provided in the home, and services are also available in nursing homes, hospitals and private hospice facilities.

The World Health Organization defines palliative care as "an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual." Sounds a lot like hospice, doesn't it? So then, what is the difference?

The difference has to do with the medical definition of chronic vs. end-stage illness and the insurance benefits structure. For a patient to be referred to hospice and receive Medicare, Medicaid or private insurance hospice benefits, a doctor must attest that, in their best estimation, a patient has 6 months or less to live. Palliative care referrals have no such requirement. A patient who has a life threatening illness, however not considered to be within that 6 month life expectancy window, can now be referred for palliative care. So, as with hospice care, the focus with a palliative care referral is symptom and pain management. Thus, all hospice care is palliative but not all palliative care is hospice care.

Finally, hospice and palliative care is now a medical and boarded specialty, requiring physicians to pass a licensing exam in order to be considered a Hospice/Palliative care doctor.

For more information on hospice and palliative care, please visit the following websites:

• The National Hospice and Palliative Care Organization
• National Hospice Foundation
• Center to Advance Palliative Care