Overview | Priorities For Palliative & Hospice Care
Membership
Links to Partners | Links to Data
PALLIATIVE CARE
Pain control is a significant problem for many with cancer. Thirty percent of people with cancer have pain at the time of diagnosis and 65-85% have pain when their disease is advanced. Cancer pain can be effectively treated in 85-95% of patients using an integrated program of therapies. Despite the existence of effective treatment options, the World Health Organization estimates that up to 70% of patients with cancer pain do not receive adequate relief. Unnecessary suffering, disability, and reduced quality of life are consequences of unrelieved cancer pain, which can lead to longer hospitals stays, increased outpatient visits, and decreased function that may result in loss of income and insurance coverage.
Reasons for ineffective pain management include lack of knowledge for patients and health care professionals, negative attitudes towards the use of medication, fear of drug addiction, drug regulations, concerns about cost, and reimbursement barriers. Additionally, cultural, ethnic, and religious factors have an influence on cancer pain management, including the cause and interpretation of pain.
Certain groups face higher risks of unrelieved pain. Minorities, females, children, the elderly, and the underserved face significant risk for under-treatment of cancer pain. Factors that may be responsible for this disparity include lack of access to pain specialists, lower rates of insurance coverage, cultural differences between patients and professionals, language barriers, and time spent with professionals.
In 2005, the American Pain Society released updated guidelines for the management of cancer pain in adults and children. There were over twenty recommendations, including regular assessment of pain, prepared health care professionals on pain management, and improved communications. Integration of these guidelines into medical practice will improve cancer pain management for those living with cancer in Maine.
END-OF-LIFE CARE
Despite improvements in prevention, detection, and treatment, cancer is a terminal illness for many people. About half of all people with cancer died from their illness within a few years of presentation. In Maine, cancer is the leading cause of death. With so many dying from cancer, the need for high quality services becomes even more critical.
In American culture there is a recognizable lack of acceptance of death, leading to reluctance in seeking end of life care. Western culture often tries to deny death as a natural process. This may create an atmosphere where some people are unprepared for their own death or the death of a loved one. They may also be unaware of the services and support that are available or they may be reluctant to seek out those services and support.
Additionally, clinical barriers to achieving high quality end of life care must be overcome. These include inappropriate attitudes of health care professionals and patients towards death, ineffective communication, fragmentation of care, and lack of availability and/or insurance coverage for high quality end of life care.
The principles that govern cancer care at the end of life are well accepted. They include responsiveness to the patients' wishes; truthful, sensitive, empathic communication; and meticulous attention to the physical, spiritual, and psychosocial needs of patients and families.
In 2002, Last Acts, a national coalition to improve care and caring near the end of life, published a report assessing the state of end of life care in the United States. Examining issues such as availability of services and trained health care professionals, adequate pain management, and public policies that support end of life care, the report gave Maine an average grade or lower for many of the assessed areas.
Recently, an assessment was conducted to learn more about Mainers' attitudes of hospice and end of life care. Overall, Mainers have an extremely positive view of hospice. However, there is confusion about reimbursement of hospice services with many not knowing that Medicare, Medicaid, and private insurers pay for these services. Given that two-thirds of respondents said they would be more likely to use hospice if they knew the costs were covered, there is an opportunity to work with payers and the public to increase awareness of financial resources for hospice services.
END-OF-LIFE CARE FOR CHILDREN
Certain issues in palliative and end-of-life care are unique to or particularly evident with children. For example, some drugs used to treat pain, nausea, and other symptoms in adults have yet to be tested or labeled for use in infants, children, or adolescents. Pediatricians thus may have inadequate information to guide their choices of drugs and minimize dangerous side effects.
A more comprehensive approach to care is needed. Regardless of the decisions made about curative or life-prolonging treatments, children with life-threatening medical problems and their families should have access to accurate information and excellent supportive care that offers physical, emotional, and spiritual comfort from the time of diagnosis through death and into bereavement, if death is the outcome. Good palliative care should benefit children who survive a life-threatening medical problem as well as those who do not and should support the families of children in both groups.
Priorities
for Palliative & Hospice Care
To increase access to high quality hospice and palliative care services to all people.
The Consortium is working with the Maine Center for Public Health to evaluate our progress. To view the Palliative and Hospice Care logic model click here.
Amy Black, Maine Center for Public Health
Becky Colwell, Health Reach Network
Doug Dieckmann, American Cancer Society
Melinda Hutchinson, Kennebec Pharmacy and Home Care
Sue Laliberte, Goodall Hospital
Donna Martin, Department of Veterans Affairs
Katie Meyer, Maine CDC
Kandyce Powell, Maine Hospice Council (CHAIR)
Janice Reynolds, Mid Coast Hospital
Holly Richards, Maine Comprehensive Cancer Control Program
To get involved in Maine's Palliative and Hospice Care activities, contact Holly Richards at 287-4321.
Links to data
http://www.cdc.gov/nchs/about/major/nhhcsd/nhhcsd.htm
http://www.nahc.org/NAHC/Research/research.html
http://www.hcfa.gov/stats/cbookhha.pdf
http://www.hcfa.gov/medicare/hsqb/oasis/oasishmp.htm
http://www.nhpco.org/
http://www.hospiceinfo.org/
http://www.ons.org/outcomes/index.shtml
It is a great resource for anyone looking for evidenced based practice symptom management in the cancer patient.