Introduction

Palliative and hospice care are recent additions as healthcare options to address the undertreatment of pain and other symptoms and the personal/familial suffering associated with chronic disease and end of life. According to Morrison and Meier (2011), these organizations' early philosophies included the belief that living with a severe illness should not mean living in pain or experiencing symptoms like shortness of breath, nausea, or fatigue.

Palliative care had a rough beginning. The first formal palliative care program in the U.S. was created as a philanthropic project during the 1970s and closed about a decade later due to lack of funds. Palliative care got a restart when in 1990, the World Health Organization (WHO) recognized palliative care as a distinct specialty dedicated to relieving suffering and improving quality of life for patients with life-limiting illnesses or serious injuries.

In 1999, the Center to Advance Palliative Care (CAPC) was established as a National Program Office of the Robert Wood Johnson Foundation to aid hospitals develop palliative care programs (Morrison et al., 2011).

All U.S. states currently have hospitals with palliative care teams. The number of hospitals within each state ranges from 100% to 33%. See the next section entitled, Prevalence of Palliative Care Programs, for more detail.

Palliative care is currently defined as care that focuses on providing patients relief from pain and managing other symptoms associated with a serious illness. Here are some significant components of palliative care:

• Offered regardless of diagnosis or stage of an illness
  
• Offered alongside curative care
  
• Focused on improving the quality of life
  
• Often provided by specially trained healthcare professionals
  
• Paid for by regular Medicare, Medicaid, and insurance programs
  
• It is offered at patient homes and in the hospital
  https://www.mayoclinic.org/tests-procedures/palliative-care/care-at-mayo-clinic/pcc-20384639.

The World Health Organization now defines palliative care as the prevention and relief of suffering of adult and pediatric patients and their families facing the problems associated with a life-threatening illness. These problems include the physical, psychological, social, and spiritual suffering of patients and psychological, social, and spiritual suffering of family members. Palliative care should also be universally accessible (Cleary et al., 2018).

Palliative care should include the following:

• Early identification, assessment, and treatment of problems associated with potentially life-threatening illnesses.
  
• Enhancement of quality of life promotes dignity and comfort and may also positively influence the course of illness.
  
• Provision of accompaniment for the patient and family throughout the illness.
  
• Integration with and complement prevention, early diagnosis, and treatment of severe or life-limiting health problems.
  
• Applicable early in the course of illness in conjunction with other therapies that are intended to prolong life.
  
• Provides an alternative to disease-modifying and life-sustaining treatment of questionable value near the end of life and assists with decision-making about the optimum use of life-sustaining treatment.
  
• It applies to those living with long-term physical, psychological, social or spiritual sequelae of serious or life-threatening illnesses or their treatment.
  
• Accompanies and supports bereaved family members after the patient's death, if needed.
  
• Seeks to mitigate the pathogenic effects of poverty on patients and families and protect them from suffering financial hardship due to illness or disability.
  
• It does not intentionally hasten death but provides whatever treatment is necessary to achieve an adequate comfort level for the patient in the context of the patient's values.
  
• It should be applied by health care workers at all levels of health care systems, including primary care providers, generalists, and specialists in many disciplines and with various levels of palliative care training and skill, from primary to intermediate to the specialist.
  
• Encourages active involvement by communities and community members.
  
• Accessible at all levels of health care systems and in patients' homes
  
• Improves continuity of care and thus strengthens health systems (Cleary et al., 2018).

The expansion of palliative care includes having it available for all ages, including children, and in homes, hospitals, and outpatient settings. Like all healthcare services, palliative care involves teamwork with doctors, nurses, pharmacists, social workers, dieticians, and chaplains as needed.

There have been some significant model changes in the development of the provision of palliative care. Early on, palliative care was in what was called a transition model that focused on curative treatment until those options were exhausted, at which time palliative care was initiated. You will see in Table 1 the Trajectory care model that Lynn and Adamson (2003) introduced. Palliative care is now provided along with curative treatment. Nurses have always been involved with administering treatments that reduced discomfort for patients. We currently see an increase in the use of palliative care as the patient's disease advances but is still receiving curative treatment.

Center to Advance Palliative Care (CAPC)

Essential developments in palliative care growth are supporting organizations like the Center to Advance Palliative Care (CAPC), which is a leading resource for palliative care program development and growth. On the center's website are essential palliative care tools, education, resources, and training for healthcare professionals. The site also includes a state-by-state report card on access to palliative care in the nation's hospitals. https://www.nationalcoalitionhpc.org/wp-content/uploads/2020/07/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf

Here are other U.S. organizations providing support and resources for palliative care. There are also numerous international associations. Palliative care is growing!

Palliative Care Organizations

• American Academy of Hospice and Palliative Medicine (AAHPM) - http://aahpm.org/
• Caring Connections https://www.nhpco.org/patients-and-caregivers/
• Center to Advance Palliative Care (CAPC) https://www.capc.org/
• Hospice and Palliative Nurses Association (HPNA) https://advancingexpertcare.org//
• National Hospice and Palliative Care Organization (NHPCO) https://www.nhpco.org/

The National Consensus Project puts forth clinical practice guidelines for quality palliative care. Guideline 1:1 in the 2018 edition addresses the interdisciplinary team. The guideline state the multidisciplinary team should consist of a team of physicians, advanced practice registered nurses, physician assistants, nurses, social workers, and chaplains. This team should work with other clinicians and community providers, giving support throughout the illness. It is a goal to integrate palliative care into routine practice (Ferrell et al., 2018).

This course will include descriptions of palliative care as a self-determination option for individuals with serious illnesses to improve their quality of life while still choosing curative treatments. A comparison of hospice services with curative/palliative care services, management of common symptoms, pain management, psychosocial, spiritual, and family issues will be followed by ethical and legal issues. This course is also an opportunity to learn how to help many patients improve their quality of life.

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Palliative care is currently defined as care that focuses on providing patients relief from pain and managing other symptoms associated with a serious illness.

Reference

Cleary, J., Krakauer, E., Jumar, S., Moine, S., Osman, H., Osorio, A. & Stoltenberg, M. (2018). Integrating palliative care and symptom relief into primary health care: a WHO guide for planners, implementers, and managers. Geneva: World Health Organization. License: CC BY-NC-SA 3.0 IGO.

Ferrell, B.R., Twaddle, M.L., Melnick, A. & and Meier, D. E. (2018). National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. Journal of Palliative Medicine. 21(12), 1684-1689.

Lynn, J., & Adamson, D. M. (2003). Living well at the end of life: Adapting health care to serious chronic illness in old age (Accession No. ADA416211). Santa Monica, CA: RAND Health.

Morrison, R. S., Maroney-Galin, C., Kralovec, P.D. & Meier, D. (2005). The growth of palliative care programs in the United States hospitals. Journal of Palliative Medicine 8, 1127-1134.

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