HealthStream Regulatory Script

End-of-Life Care
Release Date: August 2008
HLC Version: 602

Lesson 1:
Lesson 2:
Lesson 3:
Lesson 4:
Lesson 5:

Introduction
Palliative vs. Curative Care
Barriers to Adequate Palliative Care
Addressing the Needs of the Dying Patient
Addressing the Needs of the Family

Lesson 1: Introduction
1001
Introduction
Welcome to the introductory lesson on end-of-life care.

IMAGE: shutterstock_6851311.JPG

As your partner, HealthStream strives to provide its customers with excellence in

regulatory learning solutions. As new guidelines are continually issued by regulatory
agencies, we work to update courses, as needed, in a timely manner. Since
responsibility for complying with new guidelines remains with your organization,
HealthStream encourages you to routinely check all relevant regulatory agencies
directly for the latest updates for clinical/organizational guidelines.
If you have concerns about any aspect of the safety or quality of patient care in your
organization, be aware that you may report these concerns directly to The Joint
Commission.

Point 1 of 4

1002
Course Rationale
Death can be frightening. This can be especially true for patients in
the terminal stages of chronic disease. These patients often wish
for a good death. However, they often fear that they will die
alone, in pain, abandoned by their caregivers.

FLASH ANIMATION

Clinicians must provide excellent end-of-life care to all dying

patients.
In this way, clinicians can:
Help patients have a good death
Calm the fears of dying patients
Support the patients family
This course will teach you how to provide excellent end-of-life care.
You will learn about:
Palliative vs. curative care
Potential barriers to palliative care
Guidelines for providing palliative care according to a
patients wishes for a good death
Guidelines for helping loved ones when a patient is dying

Point 2 of 4

1003
Course Goals
After completing this course, you should be able to:
Distinguish between palliative and curative care
Identify potential barriers to adequate palliative care, as
well as methods for overcoming these barriers
Recognize the key components of a palliative care
consultation, including how to meet patient needs in each
key area
List the needs typically associated with the family
members of a dying patient, including clinical best
practices for meeting these needs

NO IMAGE

Point 3 of 4

1004
Course Outline
This introductory lesson gave the course rationale and goals.

FLASH ANIMATION

Lesson 2 presents background information on end-of-life care.

Lesson 1: Introduction
Lesson 2: Curative vs. Palliative Care
Curative care
Palliative care
Integrated care
Lesson 3: Barriers to Adequate Palliative Care
Communication failures
Bias toward curative care
Lack of cultural competence
Lesson 4: Addressing The Needs of The Dying
Patient
The palliative care consultation
Identifying patient needs
Meeting patient needs
Lesson 5: Addressing The Needs of The Family
Family needs
Meeting these needs

Lesson 3 provides information on potential barriers to adequate

palliative care.
Lesson 4 presents specific guidelines for providing palliative care.
Finally, lesson 5 describes practices and guidelines for addressing
the needs of the family when a patient is dying.

Point 4 of 4

Lesson 2: Curative vs. Palliative Care

2001
Introduction & Objectives

Welcome to the lesson on curative vs. palliative care.

FLASH ANIMATION

After completing this lesson, you should be able to:

Distinguish between curative and palliative care
Recognize key features of palliative care
List benefits of using palliative and curative care together

Lesson 2: Curative vs. Palliative Care

Curative care
Palliative care
Integrated care

Point 1 of 16

2002
Causes of Death: Acute vs. Chronic
In 1900, most people died of infectious disease. Death was rapid
and certain.

IMAGE: 2002.JPG

Death comes differently in the industrialized world today. Today,

about 70% to 80% of all people die later in life. Death occurs due
to chronic or degenerative disease [glossary].
This type of disease is not rapid.
Instead, patients experience:
Slow onset of symptoms
Gradual decline in health

Point 2 of 16

2003
Care of Disease: Acute vs. Chronic
When treating acute infectious disease, the goal is to cure the
patient. If the cure is successful, the patient recovers. If the cure is
unsuccessful, the patient dies.

IMAGE: 2003.JPG

Care of chronic disease tends to be more complex.

Remember: Chronic disease has a slow onset and a long course.
Therefore, care often has two phases:
Cure
Comfort
Lets take a closer look at each.

Point 3 of 16

2004
Cure
In the early stages of chronic disease, the goal is often to cure the
patient.

IMAGE: 2004.JPG

Monitoring, diagnostic tests, and treatment are aimed at:

Finding the cause of the disease
Eliminating the cause, if possible
In some cases, curative care is successful. In these cases, the
patient returns to full health.

Point 4 of 16

2005
Comfort
In many cases of chronic disease, curative care is not entirely
successful.

IMAGE: 2005.JPG

Sooner or later:
The patients health continues to decline.
The patient moves into the terminal stages of the disease.
The focus of care then shifts from cure to comfort.

Point 5 of 16

2006
Palliative Care: Definition
Comfort care for patients near the end of life is commonly called
palliative care.

IMAGE: 2006.JPG

The World Health Organization (WHO) defines palliative care as:

an approach that improves the quality of life of patients and
their families facing the problems associated with life-threatening
illness. This is done through the prevention and relief of suffering,
with early identification and impeccable assessment and treatment
of pain and other problems, including physical, psychosocial and
spiritual issues.

On the following screen, lets take a closer look at the who, what,
when, where, and why of palliative care.
Note: This lesson provides an overview of palliative care. More
detailed guidelines for providing palliative care are presented in
lessons 4 and 5.

Point 6 of 16

2007
Palliative Care: What and Why
Remember: The goals of palliative care are:
To comfort, not to cure
To increase quality of life

IMAGE: 2007.JPG

Comfort means:
Controlling pain and other physical symptoms
Treating the dying patient with dignity
Respecting the dying patients cultural beliefs around
death and dying
Respecting the dying patients wishes not to receive lifesustaining treatments that do not improve the quality of life
Meeting the dying patients psychological and spiritual
needs
Meeting the dying patients social and interpersonal needs
In short, palliative care treats the whole person.
The goal is to give the patient the highest possible quality of life
during his or her final days, weeks, or months.

Point 7 of 16

2008
Palliative Care: Who (1)

Remember: Palliative care treats the whole person.

IMAGE: 2008.JPG

Therefore, the care team must be multidisciplinary [glossary].

Members of the care team may include:
Physicians
Nurses
Pharmacists
Social workers
Counselors
Clergy
Physical therapists
Occupational therapists
Music therapists
Art therapists

Point 8 of 16

2009
Palliative Care: Who (2)
All healthcare providers should know about palliative care.

IMAGE: 2009.JPG

However, the group most commonly associated with palliative care

is hospice.
Hospice has a complete range of palliative care services.
For a patient to qualify for hospice:
The patient must have a terminal illness.
A medical professional must certify that the patient has no
more than six months to live.
The patient must agree to give up all curative treatment.

Point 9 of 16

2010
Palliative Care: Where
A patient may receive palliative care:
In the hospital
At home
At a nursing home
At a dedicated hospice facility

IMAGE: 2010.JPG

Hospice can give palliative care in any of these settings.

In hospitals and other healthcare facilities, all clinical staff should
know how to provide palliative care. This ensures that all patients
will have excellent end-of-life care, whether or not they have
hospice.
Many organizations have developed palliative care teams. They
can direct a patients care and provide expertise about end-of-life
issues.

Point 10 of 16

2011
Palliative Care: When
Curative care and palliative care are often thought of separately.

IMAGE: 2011.JPG

Remember:
The WHO definition of palliative care states: Palliative
care is an approach that improves the quality of life of
patients and their families facing the problems associated
with life-threatening illness.
Hospice is an option only in the final stages of terminal
disease. Hospice requires patients to give up curative
treatment.
However, palliative care practices may be used throughout a
patients treatment. This is true even when the goal of treatment is
to cure.
Lets take a closer look.

Point 11 of 16

2012
Integration of Palliative Care: Key Elements
Even when care is focused on cure, it should also give comfort.

IMAGE: 2012.JPG

All care should:

Manage pain and other symptoms
Meet the patients psychosocial needs
Help the patient have the highest possible quality of life

Point 12 of 16

2013
Integration of Palliative Care: Benefits
When palliative care and curative care are used together:
Quality of life is a priority throughout treatment, not just
near the end of life.
Patients see that relieving pain and other symptoms is
important throughout treatment, not just near the end of
life.
Patients are less likely to see a shift in focus toward
palliative care as a sign that healthcare providers have
given up on them.
Terminally ill patients have opportunities to find meaning
and closure throughout the course of the disease, not just
near the end of life.

Curative therapies can be used even when palliative

care is the focus. For example, curative local radiation
may be used in a palliative way to relieve symptoms of
terminal metastatic [glossary] cancer.

IMAGE: 2013.JPG

Point 13 of 16

2014
Review

FLASH INTERACTION: 2014.SWF/FLA

Drag and drop the terms from the list at the bottom to their proper
place in the chart.

[Curative]
The focus is on the disease.
This form of care is used mostly in the early stages of
chronic disease.
The main goal is full recovery.

[Palliative]
The focus is on the person.
This form of care is used mostly in the terminal stages of
chronic disease.
The main goals are comfort and quality of life.

Point 14 of 16

2015
Review
Hospice workers can come to hospitals. Therefore, core hospital
staff do not need to know about palliative care.

TRUE / FALSE INTERACTION

Correct: B

a. True
b. False

Feedback for A: Incorrect. This statement is false. All

clinical staff should know how to provide palliative services.
This ensures that all patients who die in hospitals will have
excellent end-of-life care, whether or not they have
hospice.
Feedback for B: Correct. All clinical staff should know how
to provide palliative services. This ensures that all patients
who die in hospitals will have excellent end-of-life care,
whether or not they have hospice.

Point 15 of 16

2016
Summary
You have completed the lesson on curative vs. palliative care.

NO IMAGE

Remember:
Chronic disease has a slow onset and a long course
Therefore, care often has two overlapping phases: curative
care and palliative care.
The primary goal of curative care is recovery.
The primary goal of palliative care is comfort and quality of
life.
Palliative care treats the whole person. Therefore, the care
team must be interdisciplinary.
The group most commonly associated with palliative care
is hospice. Hospice has a full range of palliative care
services.
All clinical staff should know how to provide excellent
palliative care.
Curative care and palliative care are often thought of
separately. In fact, elements of palliative care should be
used throughout treatment. This is true even when the
primary focus of care is cure.
Using palliative and curative care together can have many
benefits.

Point 16 of 16

Lesson 3: Barriers to Adequate Palliative Care

3001
Introduction & Objectives

Welcome to the lesson on barriers to palliative care.

FLASH ANIMATION

After completing this lesson, you should be able to:

List three key factors that contribute to inadequate end-oflife care for many patients
Identify best practices for providing adequate end-of-life
care

Lesson 3: Barriers to Adequate Palliative Care

Communication failures
Bias toward curative care
Lack of cultural competence

Point 1 of 16

3002
Current State of Palliative Care
All patients should be able to expect excellent end-of-life care.
They should expect to:
Die without unnecessary pain or other physical suffering
Die according to their end-of-life preferences and
treatment decisions

IMAGE: 3002.JPG

In fact, studies have shown that:

Many patients have significant pain or other physical
symptoms near the end of life.
Many clinicians do not know whether their patients want
life-sustaining treatment near the end of life.
Many clinicians do not follow their patients end-of-life
treatment decisions.

Point 2 of 16

3003
Reasons for Inadequate End-of-Life Care
Why are so many patients receiving poor care at the end of life?

IMAGE: 3003.JPG

Reasons include:
Failures in communication
Bias toward curative care
Lack of cultural sensitivity
Lets take a closer look at these reasons.

Point 3 of 16

3004
Communication Failures: What
Patients and clinicians do not always communicate fully.

IMAGE: 3004.JPG

As a result, clinicians often do not understand what patients want

and need near the end of life.
The clinician may not meet the patients needs for:
Pain management
Spiritual counseling
The clinician may give unwanted life-sustaining treatment that:
Decreases the patients quality of life in his or her last days
Prolongs the process of dying
Increases suffering for the patient
Upsets the patients loved ones

Point 4 of 16

3005
Communication Failures: Why
Death and dying are never easy topics to discuss. This is true for
both the clinician and the patient.

IMAGE: 3005.JPG

As a result, clinicians may:

Offer false hope, instead of giving accurate information.
Avoid asking patients what they need and want near the
end of life.
When clinicians do not ask, patients may not say what they need
and want. Reasons for this include:
Confusion over unclear information
Fear or denial of death
Incorrect belief that the clinician, family, and friends
already know what they need and want

Point 5 of 15

3006
Communication Failures: Correcting Failures
Clinicians must understand what their patients need and
want.

IMAGE: 3006.JPG

As a clinician, you can find out what patients need and want by:
Improving communication
Encouraging patients to complete an advance directive
[glossary]
Lets take a closer look at each of these methods.

Point 6 of 16

3007
Correcting Communication Failures: Improving Communication (1)
Certain approaches can help clinicians
communicate with patients near the end of life.
These approaches include:
Begin with open-ended questions.
Follow up on the patients initial
responses by asking more questions.
Use the patients own words.
Move on to specific questions about
palliative care and other end-of-life
choices.
Ask direct questions about the
patients symptoms.
Screen for spiritual or existential
concerns.
Click on each method to learn more.

CLICK TO REVEAL
Begin with open-ended questions.
Open-ended questions can help you:

Understand the patients view of his or her illness or prognosis.

Identify the patients values, concerns, and goals for care.

Follow up on the patients initial responses by asking more questions. Use the
patients own words.
This method:

Shows the patient that you are listening.

Shows the patient that you understand his or her viewpoint.

Encourages the patient to share additional concerns, feelings, fears, etc.

Move on to specific questions about palliative care and other end-of-life
choices.
Ask about:

Home care vs. hospital care at the end of life

Use of life-sustaining treatment

Any specific concerns and fears the patient has shared

Ask direct questions about the patients symptoms.
To give appropriate palliative care, you must know your patients symptoms. Screen
for:

Pain

Fatigue

Shortness of breath

Symptoms of the illness

Depression

Screen for spiritual or existential [glossary] concerns.

Clinicians are not always comfortable discussing spiritual issues. However,
dying patients often have spiritual concerns. If necessary, refer patients to a
religious or spiritual advisor.
Point 7 of 16

3008
Correcting Communication Failures: Improving Communication (2)
Other approaches for communication include:
Try a less direct approach to screening for distress
Involve the family
Make sure all terms are clearly defined and
understood
Click on each method to learn more.

CLICK TO REVEAL
Try a less direct approach to screening for distress.
Some patients will not give useful answers to direct
questions about symptoms and concerns. You may need to
take an indirect approach. For example:
Ask the patient how family members are dealing
with his or her illness
Ask the patient how friends or family members
have dealt with a similar illness
Involve the family.
Ask the patient for consent to include family members in
the conversation. Family members often raise additional
issues or concerns.
Make sure all terms are clearly defined and
understood.
To avoid any misunderstandings:
Do not use jargon [glossary]
State diagnoses, prognoses, and care options
clearly
Define any terms that may be unfamiliar to patients

Point 8 of 16

3009
Correcting Communication Failures: Advance Directives
Patients often do not explain what they need and want near the
end of life, because they think that their family, friends, and doctor
already know.

IMAGE: 3009.JPG

In fact, family members and physicians often do not know what

patients need and want.
Therefore, encourage all adult patients to complete an advance
directive. This could be a living will or a healthcare power of
attorney.
An advance directive helps ensure that a patients wishes for endof-life care will be respected, whenever the time comes.

Point 9 of 16

3010
Review
A patient has a prognosis of less than six months to live.
Communicate effectively with this patient by:

MULTIPLE CHOICE INTERACTION

Correct answer: D

a. Reassuring the patient that he should not give up hope for

a full recovery.
b. Informing the patient of his prognosis using medical and
technical jargon.
c. Strongly encouraging the patient to enroll in clinical trials of
a promising new drug.
d. Asking open-ended questions to help identify the patients
values, concerns, and goals for care.

Feedback for A: Incorrect. Clinicians often wish to keep

hope alive. However, it is important to provide accurate
information, rather than false hope. The correct answer is
D. Ask open-ended questions to find out what the patient
needs and wants.
Feedback for B: Incorrect. Jargon may make it easier for
the clinician to talk about death and dying. However, the
patient needs clear and accurate information that he can
understand. The correct answer is D. Ask open-ended
questions to find out what the patient needs and wants.
Feedback for C: Incorrect. This is not the best answer. The
patient may wish to try an experimental drug. However, this
should not be the first topic of conversation. The best
answer is D. Ask open-ended questions to find out what
the patient needs and wants.
Feedback for D: Correct. Ask open-ended questions to find
out what the patient needs and wants.

Point 10 of 16

3011
Bias Toward Curative Care
In general, the Western healthcare system has a strong bias
toward curative care.

IMAGE: 3011.JPG

As a result:
Many clinicians have little experience or training in
palliative care.
Clinicians may see palliative care as failure. They may
think palliative care is the same as giving up on a patient.
This can lead to poor palliative care.

Point 11 of 16

3012
Bias Toward Curative Care: Correcting the Bias
Clinicians must be trained on:
The importance of palliative care
How to provide proper end-of-life care

IMAGE: 3012.JPG

Clinicians must understand that many patients value a good

death. Many patients do not want heroic use of medicine and
technology to prolong life. They would rather have a good death.
Therefore, excellent end-of-life care comes back to:
Communicating with patients to understand their end-oflife needs and wants
Respecting what each patient needs and wants,
regardless of any preexisting biases

Point 12 of 16

3013
Lack of Cultural Competence
There are many cultural norms and taboos [glossary] around death
and dying.

IMAGE: 3013.JPG

For example, a patients culture may:

Forbid the use of certain types of life support
Dictate that a patient should not be told of a terminal
diagnosis
Require that a patient die at home
Forbid all talk of death or dying. Speaking of death may be
thought to cause death.
Choose a particular family member to make all healthcare
decisions for the family
Clinicians must be aware of their patients cultural norms and
values around death and dying. Otherwise, they risk losing their
patients trust. They also risk distressing their patients by:
Breaking taboos
Providing unwanted or improper end-of-life care

Point 13 of 16

3014
Lack of Cultural Competence: Improving Competence
Remember: Clinicians must understand what their patients need
and want near the end of life.

IMAGE: 3014.JPG

This requires good communication.

To improve communication with a patient from a different culture:
Educate yourself about the patients culture. Use what you
learn as a guide. However, be careful not to stereotype the
patient.
Talk to the patients family before talking to the patient.
Find out who makes healthcare decisions for the family.
Find out whether it is okay to tell the patient about a
terminal diagnosis. If not, find out who should be informed.
Allow the patient to reveal his or her values, beliefs,
concerns, fears, and goals for care. Do not impose your
beliefs and biases.
When necessary, use a medical translator. Translators can
be particular useful when discussing end-of-life care. They
often know acceptable euphemisms [glossary] for taboo
words and subjects.

Point 14 of 16

3015
Review
A clinician may take heroic measures to prolong life if he or she
has:
a. A bias toward curative care near the end of life
b. A bias toward palliative care near the end of life
c. Both of these
d. Neither of these

MULTIPLE CHOICE INTERACTION

Correct: A
Feedback for A: Correct.
Feedback for B: Incorrect. The correct answer is A.
Feedback for C: Incorrect. The correct answer is A.
Feedback for D. Incorrect. The correct answer is A.

Point 15 of 16

3016
Summary
You have completed the lesson on barriers to palliative care.

NO IMAGE

Remember:
All terminally ill patients should expect to die without
unnecessary pain. They should expect to die according to
their end-of-life preferences.
Instead, many patients suffer significant pain near the end
of life. Many clinicians do not follow their patients end-oflife preferences.
Patients and clinicians do not always communicate fully.
Therefore, clinicians often do not understand and meet
their patients needs and wants near the end of life.
Clinicians must be willing to talk about end-of-life issues
directly and openly. They must provide accurate
information. They also must ask the right questions.
All adult patients should be encouraged to complete an
advance directive.
Clinicians must be willing to put aside their bias toward
curative care near the end of a patients life. They must
understand that many patients value a good death over
heroic measures to prolong life.
Clinicians must act with cultural sensitivity when providing
care to patients near the end of life.

Point 16 of 16

Lesson 4: Addressing the Needs of the Dying Patient

4001
Introduction & Objectives

Welcome to the lesson on addressing the needs of the dying

patient.
After completing this lesson, you should be able to:
List the parts of the palliative care consultation
Identify the function and goal of each part

FLASH ANIMATION
Lesson 4: Addressing The Needs of The Dying
Patient
The palliative care consultation
Identifying patient needs
Meeting patient needs

Point 1 of 16

4002
The Palliative Care Consultation
Remember: Good communication is one of the keys to excellent
end-of-life care.

IMAGE: 4002.JPG

Communication should be ongoing throughout treatment. This

communication does not always need to be highly formal.
When a patient nears the end of life, however, a structured
palliative care consultation is often a good idea.
This consultation should address:
Prognosis
Personal goals for end-of-life care
Physical symptoms
Psychological, social, and spiritual needs
Support systems
Discharge planning
Lets take a closer look at each of these elements.
Note: The following screens describe a palliative care consultation
with the patient actively involved. When the patient is a minor or a
non-competent adult:
The patients legal representative should be involved.
The patients advance directive should be consulted.

Point 2 of 16

4003
Prognosis
Remember: Terminally ill patients need accurate information.

IMAGE: 4003.JPG

Accurate information includes an estimate of time left.

This information can help patients:
Make treatment decisions.
Set goals for end-of-life care.
Prepare psychologically for death.
Draw upon support services. For example, hospice will not
provide services unless a patient has a certified prognosis
of no more than six months left to live.

Point 3 of 16

4004
Prognosis: Time Left
Clinicians often do not like to answer the question, How much
time do I have left?

IMAGE: 4004.JPG

The answer can never be exact or certain.

Remember: Patients often need and want this information.
Therefore, provide an estimate. Then explain that predictions of
time left are always uncertain. This is especially true:
For prognoses beyond three to six months
If multiple health factors are involved
If the clinician making the prediction is inexperienced
If the prognosis is for a disease other than cancer

Point 4 of 16

4005
Personal Goals for End-of-Life Care
The patient knows his or her prognosis.

IMAGE: 4005.JPG

The next step is for the patient to decide on personal end-of-life

care goals.
This often requires input or help from clinicians and family
members.
The patient may consider goals such as:
Managing pain and other physical symptoms
Taking care of psychological, spiritual, or social issues and
concerns
Avoiding unwanted postponement of dying
Maintaining control over the course of care by completing
an advance directive
Creating a comfortable inpatient environment
Returning home
Avoiding future hospitalization

Point 5 of 16

4006
Personal Goals for End-of-Life Care: Maximizing Comfort and Minimizing Burden
In general, end-of-life care goals should focus on:
Maximizing comfort
Minimizing burden

IMAGE: 4006.JPG

Therefore, patients who remain hospitalized may wish to stop

routine care such as:
Monitoring vital signs
Standard labs and tests
Note: For some patients, vitals, labs, and tests may be a burden.
For others, this routine may provide psychological comfort. As
always, communicate with patients to meet their needs and wants.

Point 6 of 16

4007
Physical Symptoms
Managing pain and other physical symptoms is often an end-of-life
care goal.

IMAGE: 4007.JPG

End-of-life symptoms should be assessed and addressed during

the palliative care consultation.
Ask about:
Pain
Dry mouth
Nausea
Water retention and swelling
Lack of appetite
Constipation
Shortness of breath
Confusion

Point 7 of 16

4008
Physical Symptoms: Management
Drugs are used to treat most physical symptoms. In general,
opioids are used.

IMAGE: 4008.JPG

Alternative treatments such as relaxation therapy, massage, music

therapy and acupuncture also may be used.
In some cases, more aggressive treatment options may be
available. For example, local radiation can relieve symptoms of
terminal metastatic cancer.
However, aggressive treatment can have unpleasant side effects.
Patients should be fully informed of the treatment options
available. They should know all possible risks, side effects, and
benefits. This will help the patient make informed treatment and
care decisions.

Point 8 of 16

4009
Physical Symptoms: Terminal Sedation
Terminal sedation refers to the use of drugs to relieve severe
distress in a terminally ill patient. This method is sometimes used
to relieve unmanageable physical pain or other symptoms.

IMAGE: 4009.JPG

Patients who request terminal sedation usually have refused life

support. Therefore, terminally sedated patients die of dehydration,
starvation, or respiratory failure.
U.S. Supreme Court decisions have indirectly supported the
legality of terminal sedation. However, the ethics of this
practice remain controversial.
Consult your supervisor or organizational policies for your facilitys
position on terminal sedation.

Point 9 of 16

4010
Psychosocial and Spiritual Needs
Common psychosocial and spiritual issues near the end of life are:
Anxiety and depression
Fear or denial of death
Concerns about finances, especially the financial stability
of the patients family after his or her death

Wanting to find closure or meaning

Wanting to strengthen relationships with loved ones

IMAGE: 4010.JPG

Meet these needs through:

Discussion
Referral to a social worker, counselor, clergyperson, etc.

Point 10 of 16

4011
Support Systems
Patients near the end of life often fear dying alone.

IMAGE: 4011.JPG

Help the patient think about possible sources of physical,

emotional, and spiritual support.
These sources may include:
Family
Friends
Coworkers
Church
Neighborhood
Hospital volunteers

Point 11 of 16

4012
Support Systems: Fear of Being a Burden
Patients near the end of life do not wish to die alone.

IMAGE: 4012.JPG

At the same time, they may fear burdening their loved ones.
The palliative care consultation should address this fear. It is best
to do so with the patients loved ones. The goal should be to:
Reassure the patient that his or her care can be arranged
in a way that does not create too much of a burden on
loved ones.
Identify resources for family members, for support if and
when they feel overwhelmed.

Point 12 of 16

4013
Discharge Planning
For inpatients, discharge planning is an essential last step in the
palliative care consultation.

IMAGE: 4013.JPG

Various options should be considered, in light of:

The patients end-of-life care goals
The patients symptom-management regimen
The patients need for medical and emotional support
The familys ability to provide care
Finances and insurance coverage
Based on these factors, options may include:
Staying in the hospital
Transferring to a long-term care facility
Transferring to a hospice facility
Going home

Point 13 of 16

4014
Review

A terminally ill patient asks, How much time do I have left? A

straightforward answer to this question can help the patient:

MULTIPLE CHOICE INTERACTION

Correct: D

a.
b.
c.
d.
e.

Prepare psychologically for death.

Make informed treatment decisions.
Set personal goals for end-of-life care.
All of the above
None of the above

Feedback for A: Not quite. The best answer is D. Many clinicians

prefer not to give estimates of time left. However, knowing their
time left can help patients make treatment decisions, set goals
for end-of-life care, and prepare psychologically for death.
Feedback for B: Not quite. The best answer is D. Many clinicians
prefer not to give estimates of time left. However, knowing their
time left can help patients make treatment decisions, set goals
for end-of-life care, and prepare psychologically for death.
Feedback for C: Not quite. The best answer is D. Many clinicians
prefer not to give estimates of time left, However, knowing their
time left can help patients make treatment decisions, set goals
for end-of-life care, and prepare psychologically for death.
Feedback for D: Correct. Many clinicians prefer not to give
estimates of time left. However, knowing their time left can
help patients make treatment decisions, set goals for end-of-life
care, and prepare psychologically for death.
Feedback for E: Incorrect. The best answer is D. Many clinicians
prefer not to give estimates of time left. However, knowing their
time left can help patients make treatment decisions, set goals
for end-of-life care, and prepare psychologically for death.

Point 14 of 16

4015
Review
Terminal sedation has been upheld in case law. However, it
remains ethically controversial.

TRUE / FALSE INTERACTION

Correct answer: A

a. True
b. False

Feedback for A: Correct. U.S. Supreme Court decisions

have indirectly supported the legality of terminal sedation.
However, the ethics of this practice remain controversial.
Be sure to check with your supervisor regarding your
facilitys policy.
Feedback for B: Incorrect. This statement is true. U.S.
Supreme Court decisions have indirectly supported the
legality of terminal sedation. However, the ethics of this
practice remain controversial. Be sure to check with your
supervisor regarding your facilitys policy.

Point 15 of 16

4016
Summary

You have completed the lesson on addressing the needs of the

dying patient.

NO IMAGE

Remember:
When a patient nears the end of life, a structured palliative
care consultation is often a good idea.
Knowing their time left can help patients set goals for
end-of-life care. It can also help them prepare
psychologically for death.
In general, end-of-life care goals should focus on
maximizing the patients comfort and minimizing the
patients burden.
Common end-of-life symptoms include pain and shortness
of breath. Both can usually be treated with drugs.
Terminal sedation refers to the use of drugs to cause a
terminally ill patient to lose consciousness. This method is
sometimes used to relieve unmanageable physical
symptoms. U.S. Supreme Court decisions have indirectly
supported the legality of terminal sedation. However, the
ethics of the practice remain controversial.
Meet the psychosocial and spiritual needs of dying
patients through discussion or referral.
Dying patients may need help in identifying support
systems. They also may need to know that their illness
and dying does not create too much of a burden on loved
ones.
For inpatients, discharge planning is an essential last step
in the palliative care consultation.
Point 16 of 16

Lesson 5: Addressing the Needs of the Family

5001
Introduction & Objectives
Welcome to the lesson on addressing the needs of the dying
patients family.
After completing this lesson, you should be able to:
List the needs of a dying persons family
Identify clinical best practices that can help meet these
needs

FLASH ANIMATION
Lesson 5: Addressing The Needs of The Family
Family needs
Meeting these needs

Point 1 of 17

5002
Palliative Care and the Family
The WHO definition states that:

IMAGE: 5002.JPG

Palliative care is an approach that improves the quality of life of

patients and their families facing the problems associated with
life-threatening illness
This definition recognizes that death does not happen in a vacuum.
Instead, death and dying have far-reaching consequences. The
patients family is profoundly affected.
Therefore, end-of-life care must consider the needs of the family,
as well as those of the patient.

Point2 of 17

5003
Needs of the Family
When a person is dying, typical needs of the family include:
To be with the person
To be helpful to the person
To be informed of the persons changing condition
To understand what is being done to the patient, and why
To know the patient is comfortable
To express their emotions and be comforted
To be reassured that they have made the right decision
(when family members make decisions to withhold or
withdraw life support)
To find meaning in the death of the person

FLASH ANIMATION: 5003.SWF

On the following screens, lets take a look at clinical best practices

that can help you address each of these needs.

Point 3 of 17

5004
To Be with the Person
When patients die in hospitals or other facilities, staff should
encourage and support the presence of family members.

FLASH ANIMATION: 5004.SWF

If at all possible, the patient should be placed in a private room.

This allows the patient to have physical and emotional intimacy
with family members.
Restrictions on visiting hours should be relaxed as much as
possible. Clinicians should be prepared for large groups at the
bedside.
If the death involves withdrawal of life support, the withdrawal
should be planned so that distant family members have enough
time to arrive.
During withdrawal of life support, distractions and barriers should
be removed. Unless it is against organizational policy:
Monitors should be turned off.
Leads, cables, and catheters should be removed.
Bedrails should be lowered.

Point 4 of 17

5005
To Be with the Person
Consider providing simple amenities [glossary]. This can help
make the familys stay more comfortable.

IMAGE: 5005.JPG

A pager or cell phone can allow family members to leave the

bedside briefly, without fear of missing the patients last moments.
Other amenities include:
Tissues
Chairs
Blankets/pillows
Coffee
Water
Telephone

Point 5 of 17

5006
To Be Helpful to the Person
Family members often have a strong desire to be helpful to the
dying person. This is especially true of parents of a dying child.

FLASH ANIMATION: 5006.SWF

Allow family members to be helpful by teaching them how to

perform:
Mouth care
Bathing
Repositioning
Assessing pain
Also, encourage family members to bring meaningful personal
articles that might comfort the patient psychologically.

Point 6 of 17

5007
To Be Informed of the Persons Changing Condition
Clinicians should take the time to explain the process of dying to
family members. This should include a clear description of:
How the patient will die
What the process of dying will look like

FLASH ANIMATION: 5007.SWF

Clinicians often need to anticipate and answer questions that

family members are unable to put into words.
It is especially important to describe the signs and symptoms of
imminent death. These include:
Decrease in consciousness
Increase in confusion or restlessness
Visions
Changes in breathing sounds or patterns
Cool or bluish arms or legs
Inability to respond to touch or sound
Family members often wish to be present in the final moments of
the patients life. Describe the above signs and symptoms to these
family members both:
Before the signs develop
As the signs develop
This ensures that family members will not leave the bedside at a
critical moment.

Point 7 of 17

5008
To Be Informed of the Persons Changing Condition
Remember: Family members should be informed about the
process of dying.

FLASH ANIMATION: 5008.SWF

However, avoid making firm predictions about a patients exact

clinical course.
These predictions are:
Difficult to make
Often inaccurate
When a loved one is dying, family members need to feel the
utmost trust in the knowledge, expertise, and competence of the
care team. Inaccurate predictions about a patients death can
cause family members to lose trust.

Point 8 of 17

5009
To Understand What Is Being Done To the Person and Why
All members of the care team should give the family consistent
information about the patients care.

FLASH ANIMATION: 5009.SWF

In most cases, it is best to choose a single member of the care

team to communicate all messages. This helps prevent any mixed
messages.

Point 9 of 17

5010
To Understand What Is Being Done To the Person and Why
Some clinicians have concerns that communicating with family
members violates HIPAA privacy rules. However, this is generally
not the case.
A clinician may share information with family members
when the clinician believes, in his or her best professional
judgment, that doing so would be in the best interest of the
patient. This includes communicating that death is
imminent.
A clinician may discuss treatment with the patient in the
presence of family members or friends as long as the
patient does not object.
If consistent with professional judgment, a clinician may
discuss an incapacitated patients condition with a family
member at the patients bedside, or over the phone.
A consent form is not necessary for the clinician to share
information for treatment purposes.

NO IMAGE

Point 10 of 17

5011
To Be Assured of the Patients Comfort
Clinicians should be able to tell family members that the patient is
comfortable. This message should be honest and believable.

FLASH ANIMATION: 5011.SWF

This requires:
Ongoing assessment and reassessment of the patients
physical pain and suffering
Drugs and treatments for relieving pain, to be used as
needed
Very close to death, patients may moan or grunt as they breathe.
Family members may fear that the patient is in pain.
Explain that these breathing patterns usually do not have to do
with pain. Provide this assurance even if family members do not
ask.

Point 11 of 17

5012
To Express Their Emotions and Be Comforted
Clinicians often feel the need to do or fix.

FLASH ANIMATION: 5012.SWF

One of the most comforting things you can do for a dying

patients family is simply to be present at the patients bedside.
Stay with the family. Allow family members to:
Sit in comfortable silence
Review the patients life
Express feelings of loss and grief
Immediately after the patients death, be sure to:
Express your sympathy. Im sorry for your loss is
perfectly adequate.
Give family members as much time and space as they
need to say final goodbyes.

Point 12 of 17

5013
To Be Reassured That They Have Made the Right Decisions
Choosing to withdraw life support can be an agonizing decision for
family members.

FLASH ANIMATION: 5013.SWF

This is especially true if the patient does not have an advance

directive.
Be certain to address any doubts or guilt by emphasizing:
The care team shares responsibility with family members
for all treatment decisions.
All decisions were made after giving careful thought to the
best interests of the patient.

Point 13 of 17

5014
To Find Meaning
After the patients death, give family members a chance to think
about the patients life.

FLASH ANIMATION: 5014.SWF

Honor the patients life and death by bathing and handling the body
according to the familys wishes. Be sure to follow any cultural
rules or customs.
The familys need for support does not end with the patients
death. The family should be given information about anticipated
bereavement needs and support networks.

Point 14 of 17

5015
Review

FLASH INTERACTION: 5015.SWF/FLA

When patients die in hospitals or other facilities, staff should
encourage and support the presence of family members.
How can staff help family members be present with their dying
loved one?
Type your thoughts in the space provided. Then click Submit to
check your answer.

Did you mention some or all of the following?

1. Place the patient in a private room, to allow for physical
and emotional intimacy.
2. Relax restrictions on visiting hours as much as possible.
3. Be prepared for large groups at the bedside.
4. Plan the withdrawal of life support so that distant family
members have time to arrive.
5. During withdrawal of life support, remove all distractions
and barriers. Turn off monitors. Remove leads, cables, and
catheters. Lower bedrails.
6. Provide simple amenities:
Pager or cell phone
Tissues
Chairs
Blankets and pillows
Coffee
Water
Telephone

Point 15 of 17

5016
Review

Family members should be informed about the process of dying.

However, clinicians should not make firm predictions about a
specific patients clinical course.
a. True
b. False

TRUE / FALSE INTERACTION

Correct: A
Feedback for A: Correct. Predictions about a specific
patients clinical course are notoriously inaccurate.
Inaccurate predictions can lead to a loss of trust, at a time
when family members need to feel the utmost confidence
in the care team.
Feedback for B: Incorrect. This statement is true.
Predictions about a specific patients clinical course are
notoriously inaccurate. Inaccurate predictions can lead to a
loss of trust, at a time when family members need to feel
the utmost confidence in the care team.

Point 16 of 17

5017
Summary

You have completed the lesson on addressing the needs of the family.

NO IMAGE

Remember:
A patients death profoundly affects the family. End-of-life care must consider
the needs of the family, as well as those of the patient.
When patients die in hospitals or other facilities, staff should encourage and
support the presence of family members.
During withdrawal of life support, all distractions and barriers should be
removed.
Allow family members to be helpful to the dying person. This is especially
important for parents of a dying child.
Explain the process of dying to family members. Clearly describe how the
patient will die, and what this will look like.
Do not make firm predictions about a specific patients clinical course.
Inaccurate predictions can lead to a loss of trust, at a time when family
members need to feel the utmost confidence in the care team.
All clinicians should give family members a consistent message about the
patients care.
HIPAA privacy rules do not necessarily prevent clinicians from
communicating with families.
Clinicians should be able to tell family members that the patient is
comfortable. The ability to give this reassurance is based on ongoing pain
assessment and use of pain medication as needed.
Allow family members to express feelings of loss and grief.
Choosing to withdraw life support can be an agonizing decision for family
members. Address any doubts or guilt.
After the patients death, give family members the time and space they need
to reflect on the patients life and say their final goodbyes.
Point 17 of 17

Course Glossary
#

Term

Definition

advance directive
amenity
credibility
euphemism

legal document stating a patients preferences for end-of-life treatment and care
something intended to make circumstances more pleasant
the quality of being believable or trustworthy
an agreeable or inoffensive expression used to replace one that might offend or suggest
something unpleasant
relating to or dealing with existence (especially with human existence)
a channel for communication between groups
something excluded from use or mention
long-term
treatment

existential
liaison
taboo
chronic
therapeutic interventions

multidisciplinary
jargon
metastatic cancer
degenerative

involving professionals from more than one specialty

characteristic language used by a particular group
cancer that has spread from its initial site to other parts of the body
relating to a progressive deterioration of a tissue or organ

Pre-Assessment
1. Which of the following is a key feature of palliative care?
a. One goal of palliative care is to control pain.
b. One goal of palliative care is to cure the patient.
c. One goal of palliative care is to find the cause of disease.
d. One goal of palliative care is to eliminate the source of disease.
Correct: One goal of palliative care is to control pain.
Rationale: Palliative care is comfort care. One goal is to control pain.
2. Which of the following best expresses a difference between curative care and palliative care?
a. Curative care focuses mostly on the disease. Palliative care focuses mostly on the patient.
b. Palliative care is associated with hospital care. Curative care is associated with hospice care.
c. Curative care is most relevant to the treatment of degenerative disease. Palliative care is most relevant to the treatment of infectious
disease.
d. Palliative care is considered successful if the disease is cured. Curative care is considered successful if pain and other symptoms are
well-controlled.
Correct: Curative care focuses mostly on the disease. Palliative care focuses mostly on the patient.
Rationale: Curative care focuses on curing the disease. Palliative care focuses on comforting the patient.
3. Palliative care is best provided by:
a. A team of nurses
b. A team of social workers
c. A team of physicians and pharmacists
d. A team of interdisciplinary care providers
Correct: A team of interdisciplinary care providers
Rationale: Palliative care is interdisciplinary.
4. Consider the following statement: "Patients see that relieving pain and other symptoms is important throughout treatment, not just near the end
of life." This is a benefit of:
a. Strictly sequencing care, to provide palliative care first, then curative care
b. Strictly sequencing care, to provide curative care first, then palliative care

c.

Integrating curative care and palliative care throughout the course of treatment

Correct: Integrating curative care and palliative care throughout the course of treatment
Rationale: Integrative curative and palliative care shows the patient that comfort and quality of life are always priorities.
5. Three key factors contribute to inadequate end-of-life care for many patients. These factors are failures in communication, lack of cultural
sensitivity, and:
a. Bias toward curative care
b. Focus on pain management
c. Widespread completion of living wills
d. Understanding of taboos around death and dying
Correct: Bias toward curative care
Rationale: Three key barriers to adequate end-of-life care are poor communication, lack of cultural sensitivity, and a bias toward curative care.
6. A best practice for providing adequate end-of-life care is:
a. Offer hope to the patient, regardless of prognosis
b. Ask direct questions about the patient's symptoms
c. Try all possible treatments to prolong a patient's life
d. Avoid distressing patients by asking about end-of-life choices
Correct: Ask direct questions about the patient's symptoms
Rationale: It is important to ask direct questions about symptoms, to ensure that all symptoms are addressed.
7. A best practice for providing adequate end-of-life care is:
a. Encourage the patient to turn to God for comfort near the end of life
b. Avoid "giving up" on the patient by shifting from curative to palliative care
c. Use appropriate medical jargon when talking about diagnosis, prognosis, and care options
d. Ask open-ended questions to help identify the patients values, concerns, and goals for care
Correct: Ask open-ended questions to help identify the patient's values, concerns, and goals for care
Rationale: It is important to ask questions that help identify the patient's care preferences.

8. During a palliative care consultation:

a. Avoid giving the patient an estimate of "time left"
b. Help the patient identify possible sources of support
c. Focus on discussing treatments aimed at curing the disease

d. Discuss physical symptoms, but avoid discussion of psychosocial needs

Correct: Help the patient identify possible sources of support
Rationale: One part of a palliative care consultation is a discussion of support systems. Help the patient identify possible sources of physical,
emotional, and spiritual support.
9. Which of the following is a best practice for meeting the needs of a dying person's family?
a. Restrict family members from performing simple care tasks
b. Make firm predictions about the patient's exact clinical course
c. Provide a clear description of what the dying process will look like
d. Strictly enforce visiting hours and limitations on number of visitors
Correct: Provide a clear description of what the dying process will look like
Rationale: Family members need and want to be informed of a dying patient's changing condition. To help meet this need, provide a clear
explanation of how the patient will die and what the dying process will look like.
10. End-of-life care must consider the needs of the family, as well as those of the patient. A TYPICAL need of family members is:
a. To avoid expressing their emotions
b. To find meaning in the death of the patient
c. To avoid being present at the patient's deathbed
d. To be shielded from information about the patient's changing condition
Correct: To find meaning in the death of the patient
Rationale: Family members typically need and want to find meaning in the death of a patient.

Final exam

1. Which of the following is a key feature of curative care?

a. The primary goal of curative care is to increase quality of life.
b. The primary goal of curative care is to control a patient's pain.
c. The primary goal of curative care is to eliminate disease in a patient.
d. The primary goal of curative care is to allow a patient to die with dignity.
Correct: The primary goal of curative care is to eliminate disease in a patient.
Rationale: Curative care focuses on curing disease.
2. Which of the following best expresses the difference between curative care and palliative care?
a. Palliative care involves aggressive treatment of disease. Curative care is not aggressive.
b. Curative care focuses mostly on the disease. Palliative care focuses mostly on the patient.
c. Curative care is most relevant to the treatment of chronic disease. Palliative care is most relevant to the treatment of acute disease.
d. Palliative care is considered successful if the patient recovers. Curative care is considered successful if the patient remains comfortable.
Correct: Curative care focuses mostly on the disease. Palliative care focuses mostly on the patient.
Rationale: Curative care focuses on curing disease. Palliative care focuses on comforting the patient.
3. Choose the true statement about palliative care and hospice:
a. Hospice provides palliative care in the patient's home only.
b. During hospice care, patients may receive treatment aimed at curing their disease.
c. Because hospice provides palliative care, other healthcare providers do not need to know about palliative care.
d. To qualify for hospice, a patient must have a terminal illness and a prognosis of no more than six months to live.
Correct: To qualify for hospice, a patient must have a terminal illness and a prognosis of no more than six months to live.
Rationale: To qualify for hospice, a patient must have a terminal illness and a prognosis of no more than six months to live. In addition, patients
must agree not to pursue treatment aimed at curing their disease.
4. Consider the following statement: "Terminally ill patients have opportunities to find meaning and closure throughout the course of disease, not
just near the end of life." This is a benefit of:
a. Strictly sequencing care, to provide palliative care first, then curative care
b. Strictly sequencing care, to provide curative care first, then palliative care
c. Integrating curative care and palliative care throughout the course of treatment
Correct: Integrating curative care and palliative care throughout the course of treatment
Rationale: Integrating curative and palliative care helps patients find meaning and closure throughout the course of their disease.

5. Three key factors contribute to inadequate end-of-life care for many patients. These factors are bias toward curative care, lack of cultural
sensitivity, and:
a. Failures in communication
b. Focus on pain management
c. Widespread completion of living wills
d. Understanding of taboos around death and dying
Correct: Failures in communication
Rationale: Three key barriers to adequate end-of-life care are bias toward curative care, lack of cultural sensitivity, and poor communication.
6. A best practice for providing adequate end-of-life care is:
a. Offer hope to the patient, regardless of prognosis
b. Try all possible treatments to prolong a patient's life
c. Encourage all patients to complete an advance directive
d. Avoid distressing patients by asking about end-of-life choices
Correct: Encourage all patients to complete an advance directive
Rationale: All patients should be encouraged to complete an advance directive. This is one of the best ways to ensure that patients' end-of-life
care choices are honored.
7. A best practice for providing adequate end-of-life care is:
a. Encourage the patient to turn to God for comfort near the end of life
b. Avoid "giving up" on the patient by shifting from curative to palliative care
c. Understand that many patients value a "good death" over heroic measures to prolong life
d. Use appropriate medical jargon when talking about diagnosis, prognosis, and care options
Correct: Understand that many patients value a "good death" over heroic measures to prolong life
Rationale: Many patients value a "good death" over heroic measures to prolong life. Clinicians must understand and respect this preference.
8. During a palliative care consultation:
a. Avoid giving the patient an estimate of "time left"
b. Focus on discussing treatments aimed at curing the disease
c. Discuss physical symptoms, but avoid discussion of spiritual needs
d. Make plans for discharge based on medical, psychosocial, and other factors
Correct: Make plans for discharge based on medical, psychosocial, and other factors
Rationale: Discharge planning is an important part of the palliative care consultation. Help patients make plans for discharge based on their
medical, psychosocial, and financials needs and resources.

9. Which of the following is a best practice for meeting the needs of a dying person's family?
a. Restrict family members from performing simple care tasks
b. Make firm predictions about the patient's exact clinical course
c. Strictly enforce visiting hours and limitations on number of visitors
d. Reassure the family that the patient's pain is being assessed and managed
Correct: Reassure the family that the patient's pain is being assessed and managed
Correct: Family members need to know that the patient is comfortable. Assess and manage the patient's pain appropriately, and reassure family
members that you are doing so.
10. End-of-life care must consider the needs of the family, as well as those of the patient. A TYPICAL need of family members is:
a. To avoid expressing their emotions
b. To avoid being present at the patient's deathbed
c. To understand what is being done to the patient, and why
d. To be shielded from information about the patient's changing condition
Correct: To understand what is being done to the patient, and why
Rationale: Family members need to understand what is being done to the patient, and why.