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 uses a team approach, 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.

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 follow-up 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:

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

You have made a difficult decision to change the focus of your treatment from curative to palliative. No doubt this decision was made after careful consideration and consultation with your doctors and members of your support team.

Most people report that they are not as fearful about dying as they are about the possibility of experiencing pain and distress. There are many ways to address physical pain and you can learn specific ways to describe your pain to your treatment team in our booklet, Controlling Cancer Pain: What You Need to Know to Get Relief.

Palliative care may be available through your local treatment center, or may be accessed through hospice. Palliative care and hospice services are provided by medical professionals who have an expertise in managing symptoms, social workers who provide support you and your family, and chaplains who provide spiritual care. Getting to know your team of health care professionals early after you decide to pursue palliative treatment will allow them to get to know you and your preferences, as well as how you respond to pain management techniques. The National Hospice and Palliative Care Organization’s Caring Connections website offers information about living with a serious illness and pain management. We offer a fact sheet, Your Health Care Team: Your Doctor is Only the Beginning, that outlines professionals who may be available to help you.

Hospice care recognizes that for some people with cancer, a cure is not possible. The focus of hospice services is to create the best quality of life for a patient by treating his or her physical, emotional, and spiritual needs, as well as supporting family needs.

While your care at this time is palliative in nature, the importance of hope can not be dismissed. Hope is that balance between positive attitude and expectations for the future. Hope can continue to nourish you, and you can nurture hope through the way in which you continue to live your life. Settling old problems and practical affairs will give you peace of mind. Make plans with family and friends as you are able to continue to engage in the activities that you enjoy. Focusing on the purpose and goals of each day will set up an achievable plan and completing what you can each day will give you satisfaction that you have done your best.