Quality End-of-Life Care

Quality End of Life Care

• Historically, quality end-of-life care has not been a primary focus for professionals.
• Key elements of quality end-of-life care involve pain management, patient involvement in decision-making, and offering support across biological and spiritual dimensions.

Considerations for Quality End of Life Care

• Essential principles include palliative and hospice care, substitute decision-makers, and advance directives.

Palliative Care

• The term "palliative" originates from the Latin word "pallium," signifying to cloak or cover.
• Palliative care has emerged as a clinically important area globally.
• Palliative medicine is a recognized specialty with the UK recognizing it since 1987, Australia and New Zealand since 1988, and more recently in Canada.
• The World Health Organization (WHO) defines palliative care as an approach that enhances the quality of life for patients and their families facing life-threatening illnesses.
• It alleviates suffering through early identification, assessment, and treatment of pain, physical, psychosocial, and spiritual problems.
• Palliative care addresses physical, psychological, social, spiritual, and practical issues, meeting associated expectations, needs, hopes, and fears for individuals and families.
• It includes preparing for and managing life closure and the dying process.
• It provides the means to cope with loss and grief during the illness and bereavement.
• Initially used in cancer treatment, palliative care is now increasingly applied to chronic, progressive pulmonary disorders, renal disease, chronic heart failure, HIV/AIDS, and progressive neurological conditions.
• Approximately 30 million people are in need of palliative care (PC).
• Death affects family members and close companions with maybe 100 million people needing support.

Goals of Palliative Care

• Improving the quality of life for both the patient and their family.
• Reducing the burden by identifying and providing for the needs of the patient and their family.
• Embracing a holistic approach that respects the dignity and worth of each person.
• Creating an environment that nurtures physical, intellectual, social, and spiritual wellbeing.
• Giving people with life-limiting illnesses a reason to hope and a feeling of greater self-confidence and dignity.
• It recognizes death as a normal part of life.
• Striving to prepare patients and their families without giving false hope.

Scope of Palliative Care

• Provides relief from distressing symptoms.
• Affirms life and regards dying as a normal process.
• Intends neither to hasten nor postpone death.
• Integrates the psychological and spiritual aspects of patient care.
• Offers support to patients while living as actively as possible.
• Offers a support system to the family.
• Uses a team approach to address the needs of patients and their families.
• Enhances the quality of life
• Applicable early in the course of illness.
• Used in conjunction with other therapies intended to prolong life.

Principles of Palliative Care

• Respecting the likes, dislikes, goals, and choices of the dying person.
• Integrating the psychological and spiritual aspects of patient care.
• Offering a support system to help patients live as actively as possible until death.
• Patient-centered rather than disease-focused.
• Focuses on healing rather than curing.
• Affirming life and regarding dying as a normal process.
• Intending neither to hasten nor postpone death.
• Supporting the needs of family members.

Palliative Care Plan

• Includes care goals, symptom management, advance care planning, financial planning, family support, spiritual care, functional status support and rehabilitation, and co-morbid disease management.

Barriers to Quality Palliative Care

• Inadequate training of healthcare personnel.
• Poor standards of care
• Lack of accountability for dying patients.
• Lack of information and resources
• Lack of investment in research.

Hospice Care

• Hospice is a philosophy of care that seeks to support dignified dying or a good death experience for those with terminal illnesses.
• Involves a team of professionals and volunteers that provide medical, psychological and spiritual support for the patients and family.
• A term coined by Dame Cicely Saunders, the founder of the first modern hospice St.Christopher’s in a residential suburb of London.

Palliative vs. Hospice Care

• In the United States, hospice is considered a type of palliative care for individuals at the end of their lives, with other countries not making this distinction.
• Both share a philosophy of reducing the severity of sickness or old age symptoms.
• Both can provided from the time of diagnosis.
• Can be given with curative treatment.
• Palliative facilitates life as easy as possible for patients and families living with serious illness.
• Hospice is given when there is an expectancy of 6 months or less.

Substitute Decision-Making

• A substitute decision maker, typically a family member or spouse, can also be a friend in certain cases.
• Patients have the right to choose and have capacity
• Decisions should reflect how the patient would want to be treated depending on previously expressed wishes.
• If previous wishes are unknown, it must be based on a patients known values and beliefs.
• If both are unknown, then base it on the patient's best intrests

Substitute Decision Maker Criteria

• Must be Above 18
• Must know the patient well and be willing to speak on behalf of the patient.
• Must be able to handle the responsibilities physically, and emotionally.

Advance Care Planning (ACP)

• It involves communication between patients, families, loved ones, surrogate decision makers, and healthcare providers.
• A discussion on prognostic information, therapeutic options, patient’s life goals, values, and wishes for further treatment.
• This is to better understand and address the patient preferences.
• ACP allows individuals to plan for future healthcare in the event of decisional incapacity, and can be conducted with healthy individuals.
• It facilitates medical and non medical care options throughout the disease including patients who may or may not retain capacity for medical decision making.
• ACP does not result in distress for patients because it associated with less bereavement complications for surrogate decision makers.

ACP in Practice

• It acknowledges and respect perspectives between medical professionals and patients.
• Gives patients a chance to make decisions in the event of incapacity and preparing for death and dying.
• Goals involve maintaining control, relieving burden, strengthening relationships, and respecting culture.

Case Studies

• Case 1 involves a person who is distraught because he wants to end his fathers life, who has end-stage metastatic lung cancer, because he is in excruciating pain.
• Case 2 involves a 35-year-old man with AIDS who has recently been diagnosed with AIDS-related dementia and his wishes for comfort measures only if he "lost his mind".
• Case 3 involves a 40-year-old who was diagnosed with a brain tumor 6 months ago and now has symptoms of early cognitive dysfunction and what the physician should tell him about advance directives.