Palliative Care:

A Concept Analysis

By Karen Davis, RN, BSN, OCN

What is palliative

care?

Do you use palliative care in your nursing practice?

History of Palliative Care

• In 1967 Dame Cicely Saunders created the first hospice program called St. Christopher’s Hospice in the United Kingdom.

• In 1974 Florence Wald and Chaplain Ed Dobihal founded the first U.S. hospice program in Connecticut.

• Hospice and Palliative care were considered the same until the 1980’s when hospital based palliative care programs were developed at the Cleveland Clinic and Medical College of Wisconsin.

• There are now over 1400 palliative care programs in the U.S.

• Over 80% of hospitals with more than 300 beds report to have a palliative care program.

Definition of Palliative

• Palliative (adjective): Serving to palliate.

• Palliative (noun): Something that palliates.

• Palliate (verb): 1. To reduce the violence of (a disease) also: to ease (symptoms) without curing the underlying disease. 2. to cover by excuses and apologies.

WHO Definition of Palliative Care

• “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessments and treatment of pain and other problems, physical, psychosocial and spiritual (WHO 2002, p 83)”

AAHPM Definition of

Palliative Care:• “Comprehensive, specialized care provided

by an interdisciplinary team to patients and families living with a life-threatening or severe advanced illness expected to progress toward dying and where care is particularly focused on alleviating suffering and promoting quality of life. Major concerns are pain and symptom management, information sharing and advance care planning, psychosocial and spiritual support and coordination of care (AAHPM 2003)”

Attributes

• Individualized patient care

• Support for the family

• Interdisciplinary teamwork

• Trust

• Safety

• Effective Communication

Individualized Patient Care

Support for the Family

Interdisciplinary Teamwork

Trust

Safety

Effective Communicatio

n

Individualized Patient Care

• Individualized patient care focuses on the physical, emotional, social and spiritual needs for that particular patient.

• It focuses on all aspects of the patient care, rather then just controlling the symptoms.

• Patients and their family members are asked to contribute to their specific goals of care.

• Care is focused on the patient and their idea of quality of life.

Support for the Family

• Palliative care does not focus solely on the patient, but rather encompasses both the patient and family as units of care.

• Family support is incredibly important to the patient at end-of-life.

• Palliative care and resources can offer opportunities for families to heal relationships, provide professional support in terms of counseling, respite care, financial counseling and bereavement support.

Interdisciplinary Teamwork

• Many different health care professionals are involved in palliative care programs: physicians, nurses, social workers, chaplains, nurse aides, dieticians and volunteers.

• All members of the palliative care team work together, along with the patient and family, to create the best goals of care for the patient.

Trust

• Patients must be able to trust the judgment of the team in that they will provide the best care available.

• It is crucial for the palliative care team to create a trusting relationship with the patient and family in order for the patient to received the most beneficial care available to them

• Patients and family members must also be able to trust in the treatments given.

• It is up to the medical team to properly educate the patient and family about the treatments the patient will be receiving and why they are important.

Safety

• Continuity of Care:

• By maintaining continuity of care, patients and family members have a feeling of safety. They are able to build trusting relationships with team members, and do not have to worry about new team members that may not know the patient’s goals of care, needs or wants.

• Competence of Care:

• Patients and family members have a feeling of safety when they believe that competent care is being provided.

Effective Communication

• Communication is vitally important in palliative care. It allows the patient, family and care team to have open conversations about advanced care planning and prognosis.

• Palliative Care allows patients and family members to get involved in the care and to help create goals of care.

• Team members must maintain open communication with the patient and family in order to continually develop and change the care plan.

Antecedents

• Acute or Chronic Illness.

• Examples: COPD, CHF, Dementia, Respiratory Failure, Acute or Chronic Renal Failure.

• Terminal or Potentially Terminal Illness.

• Examples: Cancer, Stroke, Brain Injuries.

Consequences

• Patient Consequences:

• Advanced Care Planning

• Increased Coping

• Increased Quality of Life

• Relief of Suffering and Symptoms

• Enhancement of Human Dignity

• Effective Closure

• Family Consequences:

• Effective Closure

• Improved Bereavement Outcomes

• Healing of Relationships

• Decreased Guilt

• Decreased Psychological Distress

• Improved Coping

Patient Consequence

s

Advanced Care

Planning

Increased Coping

Increased Quality of

Life

Relief of Suffering

and Symptoms

Enhancement of

Human Dignity

Effective Closure

Family Consequence

s

Improved Coping

Decreased Psychological Distress

Decreased Guilt

Improved Bereaveme

nt Outcomes

Healing Relationshi

ps

Effective Closure

Barriers to Palliative Care:

• There are 3 main categories of obstacles for patients to receive palliative care:• Family members creating obstacles• Health professionals creating obstacles• Conflict between ideal care and

patient’s wishes

Families Creating Obstacles

• Lack of openness of communication between family members and patient and between family members and health care team.

• Forbid the health care team to discuss the patient’s diagnosis and prognosis with the patient.

• Demand complete control over the patient’s goals of care.

• Want to continue treatment that is futile to the patient.

• Limit medications or care delivered to the patient.

Health Professionals Creating Obstacles

• Double Effect

• Active Euthanasia

• Own Fear of Dying

• Medicare Laws

• Opioid Prescribing Laws

• Lack of Knowledge about Palliative Care

Conflict Between Ideal Care and Patient Wishes

• Patient may want to stay at home, even when symptoms are too great to be treated at home.

• Fear of hospitalization

• Wish to maintain their autonomy

• Loss of control

Importance of Concept to Nursing

Practice• Understanding of the palliative care concept will help

to enhance patients’ quality of life.

• In order for palliative care to benefit the patient, it must be used to the best of its abilities.

• It is an evolving concept, nurses must continually stay educated on any changes made to the palliative care concept

• Nurses must know when to introduce to topic of palliative care to patients and their family.

• Must not be afraid to bring up the topic of palliative care, or to suggest it to a physician.

SUPPORT Study

• SUPPORT study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments)• Conducted in the U.S.

to learn how to improve the care of the dying patient within our healthcare system.

• Indicated the need for earlier intervention in planning with patients and families.

• Development of new vocabulary to describe the time before end-of-life when palliative care should begin.

• Access to palliative care and hospice care has less to do with the patient’s decisions and more to do with the systems of care and how they function.

Government and Palliative Care

• Patient Protection and Affordable Care Act• Signed by President Obama in March of 2010. • Act seeks to expand the palliative care system in

the U.S.

• Health Care Financing Administration• Regulates amount of reimbursement from Medicare

and Medicaid to palliative care programs

• Joint Commission Standards• Set of standards that each hospital with a palliative

care program must abide by in order to maintain their certification

References• Brenner, Paul R. (2000). Palliative care and hospice: One approach. American Journal

of Hospice and Palliative Medicine, 17, 241-244. doi:10.1177/104990910001700409

• Meghani, Salimah H. (2003). A concept analysis of palliative care in the United States. Journal of Advanced Nursing, 46(2), 152-161.

• Meier, Diane E., Morrison, R. Sean, Cassel, Christine. (1997). Improving palliative care. Annals of Internal Medicine, 127(3), 225-230.

• Kaur, Judith S. (2000). Palliative care and hospice programs. Mayo Clinic Proceedings, 75(2), 181-184.

• Philip, Jennifer A.M., Komesaroff, Paul. (2006). Ideals and compromises in palliative care. Journal of Palliative Medicine, 9(6), 1339-1347.

• Reb, Anne M. (2003). Palliative and end-of-life care: Policy analysis. Oncology Nursing Forum, 30(1), 35-50

• Werkander Harstade, Carina., Andershed, Birgitta. (2004). Good palliative care: how and where?. Journal of Hospice and Palliative Nursing, 6(1), 27-35.