In an aging population with rapidly increasing technological interventions possible, end of life care is a vital discussion. With multiple perspectives to consider, these resources serve to convey the breadth of opinion that nurses experience, and help nurses respect individual dignity and autonomy.
Advance directives
End of life care often starts when a person is healthy. Many people, including nurses, have specific ideas about what health care they want, or do not want, at the end of life. Advance directives are a means to allow people to convey their wishes for end of life care. This includes discussions with those who might be a surrogate decision maker, as well as documents used to express preferences.
The National Hospice & Palliative Care Organization (NHPCO)
HHPCO has a directory of
advance directives that are acceptable to each statue.
Five Wishes
An easy guide for patients and families to discuss preferences for end of life care, as well as for healthcare professionals who might not be comfortable with such discussions. The guide includes prompts for discussions about how you wish to be remembered.
Education
The End-of-Life Nursing Consortium (ELNEC)
ELNEC is a series of programs developed by the American Association of Colleges of Nursing. Current ELNEC modules include core curriculum, pediatric palliative care, geriatric, and many others. There are also train-the-trainer modules. After taking a train the trainer course, a nurse can then offer an ELNEC course. The courses
are comprehensive and provide all teaching materials needed. The courses are typically offered in a block over two days.
Education in Palliative and End of Life Care (EPEC)
EPEC was originally developed as physician education but has expanded. It has both in-seat and online programs. The model includes the training of facilitators.
Sessions may be given in day-long formats, or in shorter sessions, such as grand rounds.
Professional Organizations
The Hospice & Palliative Nurses Association (HPNA)
HPNA has the mission of advancing expert care in serious illness. HPNA is the professional organization for palliative care nurses and hospice nurses. HPNA provides education and certification for nurses across levels, including
Advance Practice Registered Nurses (APRN), Registered Nurses (RN), RN Pediatrics, and more. HPNA has many Special Interest Groups (SIGs) with online discussion groups. The organization has also developed a series of position statements to guide professional practice. With The American Academy of Hospice & Palliative Medicine (AAHPM), HPNA has an annual assembly for professionals.
The American Academy
of Hospice & Palliative Medicine (AAHPM)
AAHPM is the professional organization for hospice physicians, palliative medicine physicians, and other health care professionals (nurses, social workers, chaplains, etc.) in these fields. Their goal is to improve the care of patients living with serious illness. AAHPM provides certification for physicians in palliative medicine, as well as for hospice medical directors. AAHPM provides many options for education, online discussion groups,
special interest groups, and certification. With HPNA, AAHPM has an annual assembly for professionals.
The Center to Advance Palliative Care (CAPC)
CAPC is a multidisciplinary organization that supports practice, research, and education. Hospitals can become member organization, and all employees of those organizations have extensive access to continuing education and other resources. Even
non-members have access to the myriad resources of CAPC.
The National Hospice & Palliative Care Organization (NHPCO)
NHPCO is one of the oldest advocacy organizations in the fields of hospice and palliative care. Their focus is primarily on the care of patients with terminal illness, and their families. They have developed Standards of Practice and have several position
statements.
The Schwartz Center
The Schwartz Center is another organization whose goal is to improve the care of patients who are dying. One of their best known efforts is Schwartz Center Rounds, which are intended as a regularly scheduled forum for caregivers to discuss the
challenges of caring for patients and families. Schwartz Center Rounds are currently held in about 550 centers in the U.S., U.K., and Canada.
Hospice
Hospice is a model of care for people who are at the end of life. Specifically, hospice care is eligible for people who are estimated to have a prognosis of six months or less. Hospice is tremendously underutilized, with about 50% of patients having a length of stay of less than 18 days, as opposed to the approximately 180 days of the hospice benefit. Misperceptions about hospice are common. A common misunderstanding is that hospice is a place (“She’s going to hospice”), rather than a model of care. Greater than 90% of hospice care occurs in patients’ homes.
The Centers for Medicare and Medicaid Services
This resource explaining the hospice guidelines is helpful for patients, families, and providers.
Elder Law Answers
This resource from Elder Law Answer is used to make the Medicare Hospice Benefit more comprehensible.