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Cancer Plan: Palliative & End Of Life 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.86 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.

Goal: Increase access to high quality hospice and palliative care services for all people.

Objective 1: Increase to 5% the proportion of nurses and physicians caring for cancer patients who have additional certification in hospice and palliative care by 2010.

Strategies

  1. Gather baseline data for the number of nurses and physicians certified in hospice and palliative care.
  2. Support education curriculum and conferences covering hospice and palliative care.
  3. Advocate for an increase in the number of nursing schools with End-of-Life Nursing Education Consortium (ELNEC) trained faculty.
  4. Advocate for an increase in Education in Palliative and End-of-Life Care (EPEC) trained faculty in the medical school.
  5. Develop continuing education in palliative and end-of-life-care for health care professionals.
  6. Develop training that incorporates effective messages and culturally appropriate communication methods regarding palliative and end-of-life services for disparate populations.
  7. Continue to encourage the board of licensure (nursing, medicine, osteopathy) to require continuing education.
  8. Continue to develop and support certificate programs in hospice and palliative care.

Objective 2: Develop a mentor program of palliative care and end-of-life health care professional by 2010.

Strategies

  1. Develop mentoring programs for all aspects of end-of-life care.
  2. Identify and recruit interdisciplinary team members who have expertise in palliative and end-of-life care.

Objective 3: Integrate Hospice and Palliative Care Services into the health care continuum and make these services available and accessible to all Mainers by 2010.

Strategies

  1. Partner with Maine health care organizations to develop strategic plans that reflect an interdisciplinary approach to palliative care.
  2. Encourage the development of residential/in-patient hospice facilities, as needed.
  3. Educate health care professionals about the technical amendment to the Medicare Hospice Benefit.
  4. Encourage collaboration between acute, skilled, long term care and community-based hospice programs.

Objective 4: Increase to 100% those settings that receive reimbursement for palliative services across the health care continuum.

Strategies

  1. Conduct a survey to gather baseline data regarding how many settings currently receive reimbursement for palliative services.
  2. Convene at least one meeting per year to clarify issues around reimbursement for end-of -life care.
  3. Offer at least one education program for third-party payers regarding evidence-based benefits of hospice and palliative care.
  4. Continue to encourage contracting between the Veterans Administration, Maine Veterans Homes and community-based hospice programs.
  5. Create and publish a comparison report on hospice and palliative care benefits for all licensed insurers in Maine.
  6. Continue to advocate for improvements in Medicare hospice reimbursement.
  7. Increase the utilization of the Medicare hospice benefit.

Objective 5: Increase the number of settings in the health care continuum that adopt the National Consensus document standards for Palliative Care by 2010.

Strategies

  1. Continue to collect baseline data on the utilization of the standards for the benchmarking process.
  2. Advocate for the inclusion of palliative care indicators in Quality Improvement Programs within all health care institutions and agencies.
  3. Evaluate data from Joint Commission surveys on pain management.
  4. Complete a market research study every five years about end-of-life care for consumers.
  5. Develop and publish a Maine-specific palliative and end-of-life care report card.
  6. Offer at least one conference that addresses palliative care disparities for acute care settings.
  7. Increase the number of palliative care committees in acute care hospitals.

Objective 6: Increase to 46% public awareness of hospice by 2010.

Baseline: Market research data 36%, 2005 Maine Hospice Council (MHC).

Strategies

  1. Continue to develop and sponsor adult education for end-of-life care.
  2. Create an online resource guide and link with appropriate organizations.
  3. Develop a web-based hospice and palliative care speaker’s bureau and link to appropriate organizations.
  4. Work with the Maine Hospital Association to increase awareness of hospice and palliative care referrals.
  5. Offer a series of workshops on expanding hospice access.
  6. Develop and promote public service announcements, printed materials and other educational efforts at least five times a year.

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