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Palliative Care

trudence Ballinger

Updated March 10, 2020

Transcript

Palliative Care

Learning Objectives

At the end of this presentation, you’ll have a clear understanding of:

Principals of palliative care
Palliative care scope and provision of services
How palliative care relates to other types of care
Barriers in accessing palliative care

Introduction to Palliative Care

What is Palliative Care?

A bit of context...

With incredible advances in medications, medical knowledge, and technology, people are now living much longer.
As a result, they often spend many years living with serious and chronic illnesses.
The major causes of death now are chronic illnesses, like heart disease and cancer
This is accompanied by physical, functional, mental, and emotional effects of their health conditions
In addition, some may refuse certain types of medical care
Dying is often treated as an illness. As a consequence, many people die in hospitals, alone and in pain

(Barondess, 2014)

"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 assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

World Health Organization

https://www.who.int/cancer/palliative/definition/en/

Pallia-what??

The name “palliative care” comes from the term “palliate,” which means, to make less severe or intense.
In medicine, “palliate” means to lessen the severity of the symptoms of an illness without curing or removing the underlying cause.
There are some diseases for which we have no cure.
https://www.youtube.com/watch?v=lDHhg76tMHc

(Meghani, 2004)

Principles of Palliative Care

Provides relief from pain and other 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 a support system to help patients live as actively as possible until death
Offers a support system to help the family cope during the patient’s illness and in their own bereavement
Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
Will enhance quality of life, and may also positively influence the course of illness

World Health Organization, 2019

Who Needs Palliative Care & Why Its Important?

Palliative care can be used during any age and any stage of a serious illness
It helps patients know what to expect, feel prepared for death, have pain and symptoms controlled, have support for family
For instance, studies have shown that palliative care provides:
Better quality of life for patient and caregivers
Help getting through difficult medical treatments
Reductions in hospitalizations and readmissions
At times faster recovery and longer survival rates
Increases a patient’s coping abilities and quality of life.
Extends beyond the patient, and sees the entire family as the focus of care.
Shown to improve stamina and social functioning and have less symptoms of depression among family and caregivers

(El-Jawahri, Greer & Temel, 2011)

(Miksch, Peters-Klimm, Engeser, Szecsenyi, 2016)

Demystifying Palliative Care

Myth #1

Myth

It means depending on others for care

Palliative care services are offered only in the hospital

It’s just nursing care

Myth

Its a place to wait for death

Myth

Myth #3

It’s just about pain relief

We need to protect children from being exposed to death and dying.

(Collins, McLachlan, & Philip, 2017)

So Remember!

Palliative Care

TREATS, PREVENTS OR RELIEVES

the symptoms of a serious or progressive illness

It does NOT CURE IT.

Scope of Palliative Care

Scope of 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 assessment and treatment of pain and other problems, physical, psychosocial and spiritual"

-World Health Organization

Who can benefit from care?

According to the National Institute on Aging (NIA), examples of those who could benefit from palliative care are individuals with heart failure, chronic obstructive pulmonary disease, cancer, dementia, Parkinson’s disease, Lung disease, kidney failure, HIV/AIDS, ALS, etc. (NIA, 2019).

https://youtu.be/8HZM0pL3a8E

Symptoms & Problems

Total Pain

Total pain is the sum of the patients physical , psychological, social and spiritual pain. This concept is central to the assessment and diagnosis of pain and suffering

Physical Problems

Symptoms or side effects include:

Pain
Trouble sleeping
Shortness of breath
Loss of appetite and feeling sick to the stomach

Treatment may include:

Medicine
Nutritional guidance
Physical therapy
Occupational therapy
Integrative therapies

Emotional, social and coping problems

Patients and their families face stress during illness that can lead to fear, anxiety, hopelessness, or depression. Family members may take on care giving, even if they also have jobs and other duties.

Treatments may include:

Counseling
Support groups
Family meetings
Referrals to mental health providers

Practical Problems

Some of the problems brought on by illness are practical, such as money- or job-related problems, insurance questions, and legal issues. A palliative care team may:

Explain complex medical forms or help families understand treatment choices

Provide or refer families to financial counseling

Help connect you to resources for transportation or housing

Spiritual issues

When people are challenged by illness, they may look for meaning or question their faith. A palliative care team may help patients and families explore their beliefs and values so they can move toward acceptance and peace.

What an assessment may look like

Assessment: Is palliative care right for you?

Do you have one or more serious illness?
Do you have symptoms that make it difficult to be as active as you would like to be, or impact your quality of life?
Have you, or someone close to you, experienced the following
Difficult side effects from treatment
Eating problems due to serious illness
Frequent emergency room visits
three or more admissions to the hospital with in 12 months, and the same symptoms
Do you, or someone close to you need help with
Knowing what to expect
Knowing what programs and resources are available
Making medical decisions about treatment choices/options
Matching your goals and values to your medical care
Understanding the pros and cons of treatments (eg. dialysis, additional cancer treatments, surgery
Do you, or someone close to you need help with :
Coping with the stress of a serious illness
Emotional support
Spiritual or religious support

Services may be provided for palliative care in many settings, such as home, hospice, skilled nursing facilities, long-term care facilities, assisted living facilities, hospitals, group homes and clinics (National Hospice and Palliative Care Organization (NHPCO), 2019). Palliative care may be covered through Medicare, Medicaid, the Department of Veterans Affairs and some private health insurances (NIA, 2019).

Who provides care?

Who gives palliative care?

Care providers

Any health care provider can give palliative care, but some providers specialize in it. Palliative care may be given by:

A team of doctors
Nurses and nurse practitioners
Physician assistants
Registered dietitians
SOCIAL WORKERS!!
Psychologists
Massage therapists
Chaplains

Types of Palliative Care

Types of Care

Primary Palliative Care

Primary Palliative Care refers to the basic skills and competencies required of all health care professionals
Some examples are internists, family medicine doctors, cardiologists, oncologists, and many other clinicians who care for seriously ill patients may provide basic palliative care.
They work with basic symptom assessment and intervention
Oncologist and primary care physicians
Referral to palliative care

Secondary/ Specialist

Palliative Care

Focuses on more complex supportive care needs
Specialist palliative care team as consultants
Inpatient units, outpatient clinics
Comprehensive assessment and management
Psychosocial and spiritual care
Communication and decision making about advance care planning and end-of-life care
Specialist palliative care may not be readily available there, except through referral to a hospice program.
Specialist palliative care is delivered by a team of trained professionals.

Tertiary Palliative Care

Tertiary palliative care refers to the academic medical centers where specialist knowledge for the most complex cases is practiced, researched, and taught.

Quick Facts:

Intensive Symptoms management
Comprehensive psychosocial and spiritual care
Often are academic centers that facilitate Palliative Care education and research.
Complex Communication and decision making about advance care planning and end-of-life care.

Pediatric Palliative Care

Each year in the United States, approximately 50,000 children die and 500,000 children cope with life-threatening conditions (Himelstein, et al., 2004)
Children also need services such as comprehensive, compassionate, and developmentally appropriate palliative care
Early integration can allow children and families to make decisions about care that fit with their values
Focus on the relief of symptoms such as pain and conditions ( loneliness) that cause distress and detract from the child's enjoyment of life.
It also seeks to ensure that bereaved families are able to remain functional and intact.

Continued ...

The literature also clearly identifies the needs of siblings of dying children, yet don't receive adequate attention.
Negative impact of language and cultural barriers on the delivery of medical care is a well-recognized problem that deserves closer attention
As social workers, when we are working with these families we need to be aware of the needs of the rest of the siblings and family members.

How do patients get referred to palliative care?

Palliative care is specialized medical care for people with serious illness.
It provides relief from the symptoms and stress of a serious illness.
The goal is to improve quality of life for both the patient and the family.
Will help meet family goals, needs and treatment process

Hospice vs. Palliative Care

Similarities:

Both provide care to patients with limiting life illnesses
Objective of both are to help relieve pain and symptoms

Differences:

Focus
Services
Setting
Providers

Brief Background of Hospice

Hospice care begins after treatment of disease is stopped and when it is clear that the person is not going to survive the illness.
At some point, it may not be possible to cure a serious illness
Patient may choose not to undergo certain treatments
The patient beginning hospice care understands that his or her illness is not responding to medical attempts to cure it or to slow the disease's progress

Hospice Background

Differences in Focus

Hospice Care

• Provided to people with serious illness who may have 6 months or less to live

Palliative Care

• Not time limited

• Most people receive these services as an added layer of support

Focus and Services

Differences in Services

Services

Palliative Care

• Telephone visits

• Help with treatment

options

• Advance care planning to

honor wishes

Hospice Care

• 24-hour on

call service

• Medical equipment

• Related drugs

• Crisis and Respite

care

• Grief and Counseling

support

Manage pain and symptoms
In-person visits
Referrals to community resources

Differences in Settings

Both Palliative and Hospice settings:

Own personal home
Skilled nursing facility
Long-term care facility
Hospitals
Group home

Setting and Providers

Palliative Care

• Long term acute facility

• Clinics

Providers:

Both palliative care and hospice care may have:

Doctors and nurses
Social workers

Barriers in

Palliative Care

Barriers

Difficult subject of death
Possible emotions of denial from both the patients and their family
Cultural and religious beliefs
In some cultures, death is a taboo topic
Misconception of its purpose
Does not only serve patients with cancer
Confusion about role of social workers
SW's involement in end-of-life care is insufficient
Lack of SW's presence within HPC contributed to confusion about what SW do (Bosma, 2010).

Jean Watson: Theory of Human Caring

Concerned with promoting health, preventing illness, caring for the sick, & restoring health

Theoretical Framework

7 Assumptions
10 Carative factors
humanistic methods we can employ in practice

7 Assumptions

Caring can:

Be effectively demonstrated/practiced inter-personally
Results in patient satisfaction
Results in family & patient growth
Requires acceptance
Empowering others to make their own choices about their care
Complements curative healing
At the core of human services

Durant, McDermott, Kinney, & Triner, 2015

Implication for Social Workers

https://www.youtube.com/watch?v=eKvPkNntHfI

Implications

SERVICE
Primary goal is to help people in need
Advocacy
Caring relationship
Promote health through knowledge & intervention
Addressing psychosocial distress/suffering caused by illness & not knowing
DIGNITY & WORTH OF THE PERSON
Respect their dignity & worth
Acceptance
Hollistic treatment approach (treat mind, body, soul, & spirit)
IMPORTANCE OF HUMAN RELATIONSHIPS
Recognize importance of relationships
Helping client/family define values & priorities
Facilitating communication among patients,families, professional team
Spend uninterrupted time with patients

National Association of Social Workers, 2019

"How can I create an environment of trust, understanding, and openness so that the patient/client and I can work together in meeting his or her needs?"

Food for thought

References

Barondess J. A. (2014). Scanning the chronic disease terrain: prospects and opportunities. Transactions of the American

Clinical and Climatological Association, 125, 45-56.

Center to Advance Palliative Care (2019). Is palliative care right for you. Retrieved from https://getpalliativecare.org

/rightforyou/.

Collins, A., McLachlan, S.-A., & Philip, J. (2017). Initial perceptions of palliative care: An exploratory qualitative study of

patients with advanced cancer and their family caregivers. Palliative Medicine, 31(9), 825–832. https://doi.org/10.1177/0269216317696420

Durant, A.F., McDermott, S., Kinney, G., & Triner, T. (2015). Caring Science: transforming the ethic of caring-healing

practice, environment, and culture within an an integrated care delivery system. Nursing Practice, 19(4), 136-142.

El-Jawahri, A., Greer, J. A., & Temel, J. S. (2011). Does palliative care improve outcomes for patients with incurable illness? A

review of the evidence. J Support Oncol, 9(3), 87-94.

Hui, D., Hannon, B. L., Zimmermann, C., & Bruera, E. (2018). Improving patient and caregiver outcomes in oncology:

Team‐based, timely, and targeted palliative care. CA: a cancer journal for clinicians, 68(5), 356-376.

Krug K, Miksch A, Peters-Klimm F, Engeser P, Szecsenyi J. Correlation between patient quality of life in palliative care

and burden of their family caregivers: a prospective observational cohort study. BMC Palliat Care. 2016;15:4. Published 2016 Jan 15. doi:10.1186/s12904-016-0082-y

Meghani, S.H. (2004). A concept analysis of palliative care in the United States. Journal of Advanced Nursing., 46(2), 152-161.

National Association Of Social Workers. (2019). Code of Ethics. Retrieved from: https://www.uaf.edu/socwork/student-

information/checklist/(D)-NASW-Code-of-Ethics.pdf

References

National Institue of Health (2019). What is palliative care. Retrieved from https://medlineplus.gov/ency/

patientinstructions/000536.htm.

National Institute on Aging. (2019). End of life: What are palliative care and hospice care? https://www.nia.nih.gov/

health/what-are-palliative-care-and-hospice-care#palliative

Ozan, Y.D., Okumus, H., & Lash, A.A. (2015). Implementation of Watson's Theory of Human Caring: A case study.

Interntional Journal of Caring Sciences, 8(1), 25-35.

World Health Organization. (2013). World Health Statistics, 2013. Retrieved from https://www.who.int/cancer/palliative

definition/en/