Education is essential to improving end of life care. The public needs to know the components of good care and where they can find the resources. Health professionals and health professional students need to be competent in providing that care. The Commission’s discussion about education centered on strategies and recommendations that would increase both the demand for high-quality end of life services and the supply of those services.

Commission recommendations focus on three areas (listed below in no particular order):

Area 1
Educating the public through the organizations represented by the Commission, faith-based communities and other interested community organizations

Area 2
Educating health care professionals and health care organizations

Area 3
Educating undergraduate and graduate students in our colleges and universities

Many people are unfamiliar with the services and resources available to those who are dying. Nor do they know what to expect from the systems that care for those who are dying. For example, in an April 1999 public opinion survey, the National Hospice and Palliative Care Organization (NHPCO) found that 80% of people did not know the meaning of the term "hospice," and only 2% mentioned that pain control was one of the services hospice offers. Additionally, 22% of people who lost a loved one in the past year due to a terminal illness used hospice services (NHPCO, 2001).

Forty-four percent of those polled did not know how hospice care is paid for. 90% of respondents did not know that Medicare is one of the funding mechanisms for hospice care. This knowledge deficit was consistent across age, income, education, and race populations (NHPCO, 2001).

While a variety of medical and community services are available to those with life-limiting illnesses, the system is fragmented and often very confusing. For example, the health care system offers nutrition counseling, but an entirely different system offers "meals on wheels."

As the father of a dying child noted:

"It’s like we have two different worlds, the medical world and the social services world, and they don’t talk to each other. I found some wonderful services for my daughter – but they were well hidden until I stumbled across them."

Public discussion of issues surrounding end of life care continues to be problematic. Dying is still considered a taboo topic. A recent survey found that Baby Boomer parents are more comfortable talking with their children about safe sex than with terminally ill parents about their care wishes (NHF, 1999). However, changes are occurring in the willingness of people to look at this topic more openly. Commission discussions and subsequent roundtable discussions around the state indicate that more people are willing to talk about specific end of life planning issues including advance directives, funeral planning and hospice care. Interviews also indicate that faith communities around the state are increasingly interested in conducting discussion groups and informational sessions with their members. However, clergy and congregational leaders require more education about ways to present information in a sensitive and knowledgeable way.

HEALTH PROFESSIONAL EDUCATION

While the public needs to understand end of life issues better, health professionals need to be able to provide the highest quality of care. Discussions with health care providers, both in the Commission meetings and in greater Minnesota, concluded that health care providers, including doctors, nurses, pharmacists, physical therapists, occupational therapists, and social workers, are not sufficiently knowledgeable about pain management, disease management, and end of life issues.

The ability to deal with death sensitively and without avoidance is a skill that can be learned. Health care professionals can be taught how to handle death and dying comfortably and sensitively (Curtis & Rubenfield, 2001). However, despite the capacity to learn how to deal with end of life situations, professionals encounter barriers to learning once they are on the job. For example, a focus-group study of social workers with extensive end of life experience identified cost, time away from work, and a biomedical focus of educational presentations as problems they faced when trying to increase their skills in end of life care (Christ & Sormanti, 1999).

Many dying patients require care that exceeds the skills of both generalists and specialist physicians (Von Gunten et al., 2000). According to research, certification in hospice and palliative care results in physicians who are highly qualified to provide palliative care, who can act as consultants to others, who can educate other specialists, and who can advocate for advancements and innovations in palliative medicine. Twenty-one of over 15,000 registered physicians and 159 of over 58,000 registered nurses in Minnesota are certified in hospice and palliative care (ABHPC, 2001 and HPCNA, 2001).

The Guiding Principles require a basic level of knowledge of end of life care issues. Education of health care professionals (medical doctors, nurses, pharmacists, physical therapists, occupational therapists, social workers) should include information on the following topics:

• Sensitive communication with end of life patients regarding advance care planning, disease progression, resources and treatment options

• Symptom management, including pain management and other physical symptoms

• Suffering assessment and intervention

• Grief and loss

Because death is not solely a medical event, education on end of life issues should be addressed for all students. Although particular emphasis needs to be placed on those who will be caring for and interacting with people at the end of life, all students should have coursework available to them.

For students who will face end of life issues in their careers, education must move beyond the theoretical to the practical to prepare students for "bedside" care. Currently end of life training for students in the health professions is fragmented. For example:

• A study of four widely-used textbooks including The Merck Manual and Harrison’s Textbook of Medicine found little information that would help a physician care for a dying patient (Carron et al., 1999).

• A national study of nursing textbooks found that in a sample of fifty texts (45,683 pages), only 2% of the content was related to end of life care (Ferrill et al., 1999).

• Social work students are more likely than students in medicine, dentistry, nursing, and pharmacy to have an entire course devoted to end of life issues. However, these courses are generally electives, and fewer than 25% of students enroll (Kramer, 1998).

• A 1992 survey of sixty-one pharmacy schools, revealed that 62% offer no education on the subject of death and dying (Dickinson et al., 1992).

• Despite the high death rates for cardiovascular and other serious chronic illnesses, an innovative course offered to occupational therapy students on aging issues contained no information about end of life care (Colantonio et al., 2000).

Community organizations, educational institutions and health care organizations will promote and support education in the areas outlined by the Five Guiding Principles.

• Educate organizations that have access to a network or membership base (e.g. faith-based and other organizations) on about such end of life topics as advance care planning, pain and symptom control, and hospice and palliative care

• Identify, develop, and maintain a catalogue of materials on end of life topics

• Distribute the Five Guiding Principles

• Support by Minnesota health care providers for the Five Guiding Principles

• Encourage hospice and palliative care certification for physicians, nurses, and other health care professionals

• Include curriculum based on the Five Guiding Principles in academic programming

• Fund further end of life care curriculum development and implementation through public and private sources

The education of our communities, health professionals, and students should be undertaken to ensure that high-quality care is delivered to patients at the end of life. The Commission on End of Life Care recommends that education should occur within member-based organizations, health care organizations, community organizations, and educational institutions. The Five Guiding Principles create the framework for all educational initiatives.