acorn curriculum final - 10 campuses across the hawaiian ...sudden death: dying is sudden and...

Appropriate End-of-Life Care of Residents in Nursing Homes

(ACORN) !UH Center on Aging

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ACORN Appropriate (End-of-Life) Care for Residents of Nursing Homes

Many of our elders die in nursing homes and other institutions. Therefore, the

integration of a quality end-of-life care into nursing home care is both natural and

logical.

The ACORN project is designed to help nursing home employees learn how to better

care for dying and grieving residents of nursing homes and to minimize transfers to

acute care facilities for futile care. It includes 8 one-hour training sessions for Certified

Nurse Aides (CNAs). It also provides technical assistant to nursing home supervisors in

the development of policies and environments that will improve care at the end of life.

Our goal is to help to transform the way America cares for dying people in long-term

care facilities.

The Goals of ACORN "# To help nursing home employees gain comfort, knowledge, and skills in end-of-

life care and bereavement support so they can better care for dying persons,

their loved ones, and those who grieve.

"# To help long-term care facilities develop policy for pain management and

compassionate end-of-life care.

"# To affirm, encourage, and celebrate cultural and spiritual diversity in end-of-life

care.



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ACORN SESSION 1 A Good Death “If we wish to die well, we must live well.”

❦ His Holiness The Dalai Lama

Learning Objectives

"# Identify the 4 dying trajectories

"# Identify two elements of a “good death.”

"# Identify the 2 similarities and 1 difference between hospice and palliative care.

"# Identify two things CNAs can do to help dying residents.

Case Study: Identifying the 4 Dying Trajectories

!"Sudden Death

!"Organ System Failure

!"Frailty

!"Terminal Illness

Mrs. Luau has just eaten lunch. As the staff are clearing the trays they notice that she

has slumped over in her wheelchair but assume she has fallen asleep. When the aide

is ready to wheel Mrs. Luau back to her room, he notices that she does not move but

instead is more slumped over. It is then he recognizes that Mrs. Luau is dead.

Mr. Tofu came to your facility 2 years ago. He has been diagnosed with lung cancer

that has spread to other organs. He was previously alert and cognitively intact but has

been getting sicker lately. He sleeps more, refuses to eat, and has become less

interested in activities. His advance directive clearly states that he does not want his

life sustained in the event of an incurable illness. He has no family and wants to die in

the nursing home. His pain seems to be managed adequately. The doctor says that he

has less than 6 months to live.



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Miss Malasada came to your facility with multiple problems including diabetes and

multiple sclerosis. Although she is only 42, her kidneys have begun to fail and she is

not responding well to treatment. She has decided to forgo any further treatment,

including dialysis.

Mrs. Long-bean is 88 years old and has severe osteoporosis. She is bedridden and has

both fecal and urinary incontinence. At only 96 pounds, she eats little, and been

following this pattern for a number of years now. Mrs. Long-bean is still lucid and

coherent and can make decisions. Her family and she have both requested that no

artificial feedings be given should she become frailer. It is uncertain how long she will

continue to live this way.

Questions for Discussion:

1. How many residents die in this facility in a similar way?

2. Do residents with this dying trajectory get transferred to the hospital?

3. Do residents like this receive hospice services?

The Four Dying Trajectories Death occurs along different trajectories or pathways. Some deaths are sudden and

occur without warning. People with terminal illness such as cancer may experience a

rapid decline in health status, losing 70-80% of function in the last 3 to 6 months of life.

People with chronic conditions may decline slowly over many years, and it is difficult to

estimate the time of death.



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Dying Trajectories

Conditions

Sudden Death: Dying is sudden and unexpected ( ~7% of all deaths). Organ System Failure: Residents may decline slowly over many years, marked by peaks and valleys, and it is difficult to estimate the time of death (~16% of all deaths). Frailty: A slow steady decline in health and function that could go on for many years (~47% of all deaths). Terminal Illness: Residents may experience a rapid decline and then die in 3-6 months (~22% of all deaths).

Trauma Aneurysm or fatal stroke Homicide and suicide Heart attack Chronic heart failure Chronic obstructive pulmonary disease Renal disease Dementia, including Alzheimer’s disease Osteoporosis Arthritis Autoimmune diseases Cancer Untreated pneumonia

A Good Death Definitions of a good death vary from person to person. Personal beliefs, preferences,

culture, religion, and past experiences can all influence perceptions of a “good” death.

Still, there are some common themes expressed by individuals preparing to die.

Elements of a good death include:

"# Managing pain and distressing symptoms.

"# Having loved ones are near, whenever possible.

"# Helping dying people recognize the meaning and purpose of their lives.

"# Helping dying people with forgiveness and reconciliation.

"# Helping dying people “tie up loose ends.”

Death in the Hospital and Nursing Home Hospitals and nursing homes are among the most highly regulated industries in

America. Despite this fact, they often fail to provide good end-of-life care.



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Did you know?:

"# 70% of deaths occur in an institution (either a hospital or nursing home), even

though most Americans want to die at home

"# Many Americans die with high-tech care that they don’t want or need.

"# Many Americans die in pain.

"# Few Americans receive hospice care.

"# Few Americans die the way they want to die.

What is Hospice Care? What is Palliative Care? The word “hospice” comes from the Latin word root word hospes, which means both

“host” and “guest.” The founder of modern-day hospice was Cicely Saunders, a nurse

and social worker who later became a physician. After a dying patient bequeathed her

money to use to help dying people, she founded a special “home for the dying,” which is

known today as hospice. As she treated dying patients, she learned that giving regular

doses of opioids, instead of waiting until the patient was in considerable pain, could

ease the pain and shortness of breath associated with the dying process. She also

found that adjuvant medicines, such as anti-inflammatory and anti-depressant drugs,

were helpful in controlling pain and other distressing symptoms common at the end of

life.

Hospice focuses on “care,” not “cure.” As Cicely Saunders showed, it does not mean

“doing nothing.” It means providing good symptom control and caring for the body,

mind, and spirit at life’s end. Hospice care:

"# Affirms life.

"# Regards dying as a normal process.

"# Neither hastens nor postpones death.

"# Provides relief from pain and other distressing symptoms.

"# Integrates the psychological, social, and spiritual dimensions of care.

"# Offers an interdisciplinary support system to help patients live as actively as

possible until death.



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"# Offers a support system to help the family cope during the patient’s illness,

death, and bereavement period. Source: Cancer Pain Relief and Palliative Care Report of a WHO Expert Committee Technical Report Series, No. 804

Palliative care is defined by the World Health Organization as “the active total care of

patients whose disease is not responsive to curative treatment.” Physical pain and

psychological, social, and spiritual problems must be addressed and treated. The goal

of palliative care is achievement of the best possible quality of life for residents and their

families. Palliative care and hospice care are similar. In the United States, insurance

will only pay for hospice services in the last 6 months of life. Therefore, in practice,

hospice is usually only available to persons with terminal illness—those who are

expected to die in 6 months or less. Palliative care can be provided to persons with a

life expectancy beyond 6 months, but whose disease is not amenable to cure.

Hospice and palliative care can be provided in any setting, including the nursing home.

Remember, however, even if a dying resident is not “on hospice,” palliative care can still

be provided.

10 Core Principles for End-of-Life Care*

1. Respect the dignity of both resident and family members.

2. Be sensitive to and respectful of the resident and family's wishes.

3. Use the most appropriate measures that are consistent with resident choices.

4. Ensure alleviation of pain and manage other physical symptoms.

5. Assess and manage psychological, social, and spiritual/religious problems.

6. Offer continuity of care.

7. Provide access to any therapy that may realistically be expected to improve the

resident's quality of life, including alternative or nontraditional treatments.

8. Provide access to palliative care and hospice care.

9. Respect the resident’s right to refuse treatment.



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10. Respect the physician’s professional responsibility to discontinue some

treatments when appropriate, with consideration for both resident and family

preferences.

* Adapted from Foley, K. & Cassel, C. (1999). Principles for Care of Patients at the End of Life: An Emerging Consensus

among the Specialties of Medicine.

The Role of the CNA in End-of-Life Care As you know, most nursing home residents in Hawaii will never return home. And,

unless they want high-tech care, they should not have to die in the hospital. Instead,

they will die under your care.

That is why it is important to be comfortable, knowledgeable, and skilled in managing

the dying process and to know how to deal effectively and compassionately with the

issues that arise. Nursing home staff can learn to identify and palliate end-of-life symptoms, talk to dying residents about their wishes and the meaning of their lives, and

help families come to the bedside.

As a CNA, you spend a great deal of time with your residents. You develop friendships

with some of the residents. And, for some residents, you may be the only family that

resident has.

When a resident is near death, the experience may be unsettling and emotionally

charged. Toward the end of life, there may be times when it seems like there is

“nothing more to be done.” But that is not true.

First, you can make sure that the resident is comfortable and that distressing symptoms

are managed. You can report your observations to the supervisor, so that appropriate

interventions can be prescribed. You can talk to the dying resident who might want to

“talk story” about his/her life. You can just “be there” for the resident, allowing the dying

person to attend to whatever is most important and to die on his or her own terms,

accepted and loved. Each resident’s journey is unique.



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Feeling comfortable with the dying process requires a willingness to enter into one’s

own fears, particularly fears associated with loss and control. Awareness of death is

“life-changing” for the dying and for all those who encounter it. Becoming intimate with

death makes us acutely aware of our own mortality and the impermanence of life. Yet

through our awareness of death, we can embrace life more fully. The last stages of life

can be very stressful for the dying person, family members, and nursing home staff.

Learning about the dying process will help.



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ACORN SESSION 1 – POST-TEST

1. Name the 4 dying trajectories.

S____________________________ O____________________________ F____________________________

T ____________________________ True or False T F

T F

T F

T F

Most deaths in America occur in institutional settings, including hospitals

and nursing homes.

Hospice care cannot be provided in nursing homes.

Hospice care pays attention to pain and symptom control, as well as the

dying person’s feelings and spiritual needs.

The principles of hospice and palliative care are similar.

How would you rate this in-service session overall?

1-------2-------3-------4-------5-------6-------7-------8-------9-------10 Not useful Very useful

1-------2-------3-------4-------5-------6-------7-------8-------9-------10 Boring Fun

Would you recommend this in-service session to others?

1-------2-------3-------4-------5-------6-------7-------8-------9-------10

Would not recommend Highly recommend



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ACORN SESSION 2 Pain Assessment and Management "We all must die. But if I can save someone from days of torture that is what I feel is my

great and ever new privilege. Pain is a more terrible lord of mankind than even death

itself." ! Albert Schweitzer

Learning Objectives "# Describe some common fears that are barriers to pain management.

"# Identify 2 scales commonly used to assess pain

"# Identify 2 non-pharmacological ways to control pain.

Case Study Mrs. Mochi is a 76-year-old resident at your facility and is dying from cancer. She has

told you that she believes her cancer is “God’s will for her life” and that she accepts her

suffering. She says she has not led a good life, and she is getting what she deserves.

1. What would you say or do?

2. What would you report to the nurse in charge?

Mr. Kim Chee has rheumatoid arthritis and end-stage renal disease and has chosen not

to have dialysis. The doctor feels he has less than a month to live. He has a great deal

of physical pain, so much so that some days he does not want to eat or speak. Mr.

Chee’s son is a drug addict, and he refuses to ask for stronger pain relief because he

does not want to get addicted.

1. What would you say or do?

2. What would you report to the nurse in charge?



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What is Pain? According to the International Association for the Study of Pain (IASP), pain is “an

unpleasant sensory and emotional experience associated with actual or potential tissue

damage or described in terms of such damage.” Simply speaking, pain is what the

person says it is!

Research suggests that many nursing home residents are in pain at the end of their

lives and that their pain is under-diagnosed and poorly treated. Residents with cancer,

osteoporosis, arthritis, and neuralgia often are in pain.

Despite scientific and medical advances in pain management, many Americans still die

in pain. Effective pain management requires an interdisciplinary approach that utilizes

the skills of every member of the health care team, including CNAs.

Pain Assessment Tools When assessing pain, the same measurement tools must be used across the facility.

Assessment tools quantify the resident’s subjective report of pain. The best tool to use

for adult residents is the numeric pain scale, with 0 being no pain and 10 being the

worst pain you’ve ever had.

Numeric Rating Scale (NRS)

|------- | ------- | ------- | ------- | ------- | ------- | ------- | ------- | ------- | ------- | 0 1 2 3 4 5 6 7 8 9 10 No Pain Mild Moderate Severe Worst Possible Pain

Another scale used to assess pain is the Wong-Baker FACES pain rating scale, ranging

from a very smiley face to a grimacing face. This scale was developed for children.



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Why Do People Die in Pain? Studies show that a large proportion of persons with advanced disease die in severe

pain. There are several reasons for this:

"# The disease process that is causing death may be painful.

"# Interventions to prolong life or treat disease may cause pain.

"# Not all health professionals are trained in pain management.

"# The prescribed medications may not be working well.

"# The healthcare provider, family, or dying person may fear addiction.

"# The dying person may feel that pain may be deserved or good.

"# Dying persons may not want to take pain medications because they fear

constipation (a common side effect) or drowsiness.

Common Fears Fear of Addiction. The fear of becoming addicted to pain medicines, such as morphine, is common. However, addiction should not be a concern among persons

who are dying and those who care for them. Some people worry that round-the-clock

dosing means that too much medicine is being taken. In reality, managing pain round-

the-clock reduces the amount of pain medicine taken. This is because it helps prevent

“breakthrough” pain and subsequent “rescue” doses. Round-the-clock dosing allows

the dying person to carry on normal activities as long as possible. Stopping medicine

abruptly because pain is better or for fear of addiction can cause the return of severe

pain. Getting pain back under control can take a long time.

Belief that Pain May Be Deserved or Good. If people believe that pain is deserved, they may underreport pain or be reluctant to ask for pain relief. Some residents may

interpret their physical pain as suffering, and refuse pain medication because they

believe that suffering is related to salvation. In these cases, it may help the dying

person to talk to a minister or priest to clarify their faith’s beliefs about physical pain,

punishment, and salvation. Remember, only when physical pain is controlled can the

issue of suffering truly be addressed.



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A Dying Person May Have These Other Fears

"# The presence of pain means my disease is getting worse.

"# Treating the pain will “mask” the real problem, which could be treated.

"# Taking too much medicine may kill me.

"# I don’t want to bother the doctor or nurse too much.

"# I don’t want to hurt my doctor or nurse’s feelings by reporting that the pain is not controlled.

Managing Physical Pain Most Physical Pain Can Be Controlled. No one should die in pain when the means to relieve it are available. All persons have the right to have their pain controlled. The

goals of good pain management are to:

"# Minimize physical pain.

"# Treat the side effects of pain medicines.

"# Recognize and offer relief for suffering.

Pain is Real. Always believe the resident when he/she says there is pain. Remember that each person is an individual and perceptions of pain differ.

What the CNA Should Ask:

"# Do you have pain?

"# Where is it? What does it feel like: dull, stabbing, throbbing, etc.?

"# How intense is the pain? Please rate it on a scale from 0 to 10, with 10 being the

worst pain you’ve ever had (or use the faces scale).

"# What do you think is causing the pain?

"# What makes the pain better or worse?

The answers to these questions will help the doctor prescribe the right medicine in the

right amount. Before the conversation is over, make sure that the dying person, family,

and staff understand:

"# What may be causing the pain



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"# The recommended treatment

"# The possible side effects

"# What to do if there are questions or concerns

Non-Pharmacological Ways to Treat Pain Complementary therapies, including traditional healing may be helpful. These non-

pharmacological sources of pain management include:

"# Healing Touch

"# Acupuncture

"# Acupressure

"# Guided Imagery

"# Massage

"# Rhythmic Breathing

"# Aroma Therapy

"# Art and Music Therapy

"# Humor

"# Hypnosis

Being an End-of-Life Advocate As a CNA, you cannot administer pain medication. But you can be an end-of-life

advocate for the dying resident. Frequent pain assessment is critical, and your

feedback to supervisory staff can make the difference between a peaceful death and a

difficult death.

SUPPPLEMENTAL MATERIAL ON PAIN Getting the Most from Pain Medicines. Medicines should be given by the least invasive route, usually by mouth in either pill or liquid form. For best pain relief,

medicines should be scheduled round-the-clock. This helps to keep pain under control

and reduces “breakthrough” pain and the memory of pain.



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"# Oral doses take effect in about 45 to 60 minutes and are at maximum strength at 90

to 120 minutes. To quicken absorption and pain relief, have the resident lie on his or

her right side. The medicine is absorbed in the small intestine, not in the stomach.

"# Skin (transdermal) patches for pain take 12 hours to be at full strength and last for

up to 3 days. Duragesic (Fentanyl) patches commonly are used to control pain.

"# Medication can be absorbed through mucosal tissue. Placing suppositories in the

rectum is a common way to administer pain medicines. Pain medicines also can be

given under the tongue (sublingual), under the upper lip, between the teeth and

gums (buccal), or vaginally. Transmucosal absorption rates are similar to those of

oral medications.

"# If pain medications cannot be given orally or transmucosally, then they can be given

intravenously (IV) or by subcutaneous injection. IV medications take effect rapidly,

in about 5 to 10 minutes.

"# Pain medicines by intramuscular (IM) injection take effect in 15 to 30 minutes. IM

medications should generally be avoided in dying patients. Injections can be painful

and may damage tissues and nerves. Lack of muscle tissue to administer the

injection as the person loses weight is also a concern. Finally, the injection site must

be rotated, increasing disruption to the resident.

Different Medications for Different Kinds of Pain. There are different approaches to pain control, depending on the kind of pain.

"# Mild pain is usually treated with pain medicines taken every 3 to 4 hours. Regular dosing of any pain medicine is very important. If medicines are not given properly,

the resident’s pain may get out of control.

"# For severe pain, long-acting medicines do a much better job. Many are taken every 12 hours. Sometimes, pain medicine is delivered through a surgically implanted

device called a pain pump. These devices deliver regular doses of pain medicine,

important in controlling severe pain. Steroids, antidepressants, anti-emetics (for

nausea), anti-anxiety agents, or other medicines may be given in addition to pain

medicine.

"# Breakthrough pain is pain that occurs intermittently. It is sometimes related to activity and sometimes occurs unpredictably. It is best to administer short-acting



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pain medications the moment the breakthrough pain starts. If there is a frequent

need for repeated dosing, the long-acting pain medications may need to be

increased. The need for frequent doses of breakthrough-pain medications is not an

indication of addiction, but an indication that the pain has become more severe

and/or the disease has progressed. In general, the goal is to prevent pain rather

than to chase pain.

Keeping Track of Pain and Pain Medication. The type and amounts of each pain medicine taken, the times given, and the pain ratings (on a scale from 0 to 10), should

always be documented in the medical record. If too many “rescue” doses are needed,

this may indicate the need for a higher round-the-clock dose. It does not mean the

resident is becoming addicted.

Common Side Effects and How to Treat Them "# Constipation. Laxatives and stool softeners are generally prescribed to relieve

constipation.

"# Dry mouth. If the resident can take liquids by mouth, offer the resident sips of water or ice chips. If not, moisten the mouth area every 15-30 minutes. If you are short of

time, train a family member to do this (if there is a willingness to provide care). Also

apply lip balm to protect the lips from dryness.

"# Nausea and vomiting. Anti-emetics may be prescribed to reduce nausea and vomiting. These medicines may cause drowsiness.

"# Confusion and disorientation. If the resident seems confused or disoriented and wishes to be more alert and oriented, a different medication should be considered. Although the goal is “zero pain at life’s end,” some people want to stay alert until the

end and are willing to put up with some pain.

"# Drowsiness and dizziness. Initially, there may be drowsiness or dizziness. These symptoms gradually improve after a few days.

"# Respiratory depression. Although respiratory depression is a common fear with strong pain medicines, if the medications are taken as instructed, this should not

occur.



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"# Itching. This bothersome symptom can be controlled with medications and typically resolves as pain management continues. Itching occurs more commonly with

natural opiates such as morphine and less commonly with synthetic pain medicines.

JCAHO Pain Standards JCAHO stands for the Joint Commission for the Accreditation of Healthcare

Organizations, which is a group that develops and checks for compliance with

standards of care. JCAHO has developed standards for pain management. Beginning

January 1, 2003, this group is checking to see if JCAHO-accredited nursing homes are

complying with these standards. The JCAHO standards require that facilities:

"# Recognize the right of patients to appropriate assessment and management of

pain

"# Assess the existence of pain and, if pain exists, assess its nature and intensity.

"# Record the results of the assessment in a way that facilitates regular reassessment and follow-up.

"# Determine and assure staff competency in pain assessment and management,

and address pain assessment and management in the orientation of all new staff.

"# Establish policies and procedures that support the appropriate prescription or ordering of effective pain medications.

"# Educate patients and their families about effective pain management.

"# Address patient needs for symptom management in the discharge planning

process.

"# Maintain a pain control performance improvement plan.



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SOAR

Subjective: What does the resident say about their pain? Ask the resident these questions:

"# Do you have pain? "# Where is it? What does it feel like: dull, stabbing, throbbing, etc.? "# How intense is the pain? Please rate it on a scale from 0 to 10, with 10 being

the worst pain you’ve ever had (or use the faces scale). "# What do you think is causing the pain? "# What makes the pain better or worse? "# What do you think might help?

Objective: What do you observe about the resident? Look at the resident and think about these questions:

"# Is the resident grimacing, crying, or moaning? "# Is the resident better or worse at certain times of the day, or after taking

medications? "# Is the resident reluctant to take pain medication due to fears about addiction,

side effects, or the meaning of pain? "# Are there other methods of pain management than might be appropriate?

Assess: Based on what the resident says and what you observe:

"# Is the resident in pain? "# Is the pain under control?

Report

"# Report your observations and findings to your supervisor. "# Encourage the resident to voice his/her concerns to the doctor, nurse, or to a

family member. "# Advocate on the residents’ behalf. "# Suggest other appropriate resources that can help. Some dying people find

relief through acupuncture, healing touch, massage, and other complementary therapies.



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ACORN SESSION 2 – POST-TEST True or false? Issues of pain control… T F

T F

T F

Pain control is one of the major goals of good end-of-life care.

Most pain can be controlled.

CNAs can help residents manage pain by asking questions about pain,

observing the resident, making an assessment about pain and pain control,

and reporting findings to the supervisor.

Identify 1 common fear that is a barrier to pain management.

1.

Identify 1 non-pharmacological way to control pain.

1.



1-------2-------3-------4-------5-------6-------7-------8-------9-------10 Boring Fun


1-------2-------3-------4-------5-------6-------7-------8-------9-------10




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ACORN SESSION 3 Managing Distressing Symptoms Learning Objectives "# Understand the common symptoms of imminent death

"# Describe things CNAs can do to relieve distressing end-of-life symptoms.

Case Study Mr. Ampalaya has cancer of the lung that has spread to his kidneys, bone, and brain.

He has stated both verbally and in his advance directive that no extraordinary measures

be taken to prolong his life. He requests that comfort care be given. He does not want

to be transferred to the hospital for treatment, but wants to die in the nursing home.

1. The pain medication necessary to keep Mr. Ampalaya comfortable is causing

constipation. You note in the chart that he hasn’t been able to have a bowel

movement for 3 days. What would you do? What would you report to the nurse

in charge?

2. You notice that Mr. Ampalaya has been breathing through his mouth, and that his

lips and mouth seem extremely dry. What would you do? What would you report

to the nurse in charge?

3. You enter the room and notice that Mr. Ampalaya is speaking to someone, but no

one is in the room. He seems reassured by the presence of this person. What

would you do? What would you report to the nurse in charge?

4. Mr. Ampalaya is restless and agitated. He is picking at the blanket. What would

you do? What would you report to the nurse in charge?



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5. Mr. Ampalaya refuses to show any interest in eating or drinking. He clenches his

teeth and turns his head away when you try to hand feed him. What would you

do? What would you report to the nurse in charge?

6. Death seems to be getting nearer. You notice that Mr. Ampalaya is no longer

responsive. His breathing seems congested and “wet,” but otherwise he seems

to be comfortable. What would you do? What would you report to the nurse in

charge?

Transitioning from Life to Death

$# Death is the irreversible ending of life.

$# Dying is the approach toward that end.

Many physical changes occur during the process of dying that affect the emotional,

social, and spiritual aspects of a person’s life. Although not everyone follows a

predictable sequence of events or stages leading to death, there are some patterns

or commonalities of dying that can be observed. In this session you will learn about

the common signs and symptoms seen in persons who are dying and what you can

do to help.

Common Symptoms and What You Can Do Sometimes referred to as the “syndrome of imminent death,” the following common

signs and symptoms usually occur in the last weeks and days of life. You may observe

none, some, or all of these signs and symptoms while caring for dying residents at your

facility.

Change in bowel and bladder function. The two major concerns are constipation and incontinence (loss of control over bowel and bladder function).

Constipation is common in nursing home residents. It may be caused by lack of

mobility, pain medication, and decreased fluid intake. If left untreated, fecal



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impaction may occur and can become uncomfortable. Laxatives are generally

needed to keep the bowels clean.

Incontinence (of both bowel and bladder) is common and normal in dying

persons. As death nears, the muscles in these areas relax further and contents

are released. Urine is sparse, but highly concentrated and may appear tea-

colored. Briefs or underpads will help keep linen clean.

What you can do:

"# Keep affected areas clean and dry to avoid rashes or bedsores. The

acidity of the urine and feces can break down skin quickly!

"# Watch for signs of constipation and incontinence, and report to RN

(this is particularly important in previously continent residents).

"# Talk to the supervising RN about the advantages of reducing food and

fluid in the last stages of dying, if that has not already occurred.

Loss of Appetite / Withholding Food and Fluid. As death nears, the resident may lose interest in food and drink. The ability to swallow becomes impaired.

Loss of appetite and food reduced intake are considered normal parts of the

dying process.

In the early stages of dying, soft foods and liquids are usually preferred. In the

very last stages of life, however, the resident may not want any food or drink. A

dying person may want to suck on ice chips or take a small amount of liquid to

wet and freshen the mouth, which can become very dry.

In the last stages of dying, forcing food when the body says “no” may be harmful

or painful to the dying person. Many dying persons will exhibit the clenched-jaw

sign as a way of saying “no.” Forcing fluid may cause choking, or the dying

person may aspirate liquid into the lungs, making matters worse.



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It is hard for staff and family members to respect the dying person’s lack of

appetite. That’s because many of us equate food with caring. It may seem that

withholding nutrition is cruel or neglectful. Some may even feel that they are

“killing” the person.

It is important to remember that as the physical body is dying, the vital organs are

shutting down, and nourishment is no longer required to keep them functioning.

This is the wisdom of dying, and the body knows exactly what to do.

What you can do:

"# Refrain from giving liquids or food unless requested/ordered.

"# Check the advance directive to understand resident wishes regarding

feeding at the end of life.

"# Give frequent mouth care (even up to every 15-30 minutes). Wet the

lips and mouth with a small amount of water, ice chips, or a sponge-

tipped applicator dipped in water (or train family to do this if they are

willing).

"# Protect lips from dryness with a protective lip balm.

Change in Skin Temperature and Color. As the body dies, the blood moves away from the extremities toward the vital organs. You may notice that while the

extremities are cool, the abdomen is warm. You may notice changes in body

temperature; the dying person may be hot one minute and cold the next. As

death approaches, there may be high fever. You also may see purplish-bluish

blotches and mottling on the legs, arms or on the underside of the body where

blood may be collecting. As death nears, the body may appear yellowish or

waxen in color.



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What you can do:

"# Keep the resident as comfortable as possible.

"# Use a damp, cool washcloth to cool a person who feels too hot (be alert to

signs such as kicking off the blankets).

"# Cover the dying resident with a blanket if he/she feels too cold. Never use

electric blankets or heating pads, as these may burn the skin.

"# Alert the supervising RN if you notice changes in skin color. This may be

a sign that death is near.

"# Using a fan, if available, to circulate air may make the resident more

comfortable.

Changes in Breathing, Congestion in Lungs or Throat. You may observe that breathing is shallow and quickened, or slow and labored. There may also be periods of

apnea. The resident may make gurgling sounds, sometimes referred to as the “death

rattle.” These sounds are caused by the passing of air through mucus that pools in the

respiratory system when the dying person loses the ability to cough them up. The

breathing pattern most disturbing to witnesses, called Cheyne-Stokes breathing, is

marked by periods of no breathing at all (up to 45 seconds), followed by deeper and

more frequent respirations. These respirations are common and result from decreased

oxygen supply to the vital organs and a build-up of waste products in the body. This

condition is not uncomfortable or painful for the dying person, although it may be

unsettling to observe. The “death rattle” and Cheyne-Stokes breathing indicate that

death is near.

What you can do:

"# Do not panic. This can increase any fear that may already be present for

the dying resident.

"# Raise the head of the bed (mechanically or with pillows) to help breathing.

"# If secretions are pooling in the mouth, turn the head and position the

resident on his/her side so that gravity can drain them. Suctioning rarely



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helps and is not recommended. Make sure the resident is relatively pain-

free before positioning!

"# Gently wipe out the mouth with a soft, moist cloth to cleanse excess

secretions.

"# Speak gently and lovingly, and use gentle reassuring touch to allay fear.

"# Alert the supervising RN if breathing is especially labored or if you notice

the “death rattle” and Cheyne-Stokes breathing.

Visions and Hallucinations. Visual or auditory hallucinations are often part of the dying experience. The appearance of family members or loved ones who

have died is common. These visions are considered normal. The dying may

turn their focus to “another world” and talk to people or see things that others do

not see. This can be unsettling for family and staff. Others may not know how to

respond.

What you can do:

"# Non-judgment and presence are critical at this time. Be as supportive

as possible.

"# Refrain from discounting the experience and orienting the resident to

“reality.” This is their reality. Most often, these “visions” are reassuring

and comforting. Rarely do they upset the dying person.

"# It is important to differentiate these visions from hallucinations or “bad

dreams” that may be caused by medications or metabolic changes.

Although visions of loved ones are generally comforting, bad dreams

may frighten the dying resident. Alert the RN about bad dreams, which

may indicate a need to adjust or prescribe medication.



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Restlessness and Agitation. Restlessness and agitation are common as death nears. These symptoms may be caused by reduced oxygen to the brain, metabolic

changes, dehydration, and pain medications. “Terminal delirium” is a condition that

may be seen when a person is very close to death, marked by extreme restlessness

and agitation. Although it may look distressing, this condition is not considered to

be painful. Be aware that there may be unfinished business. Dying persons may try

to “hold on” until they feel a sense of security and completion. Picking, pulling, and fidgeting behaviors may also be seen.

What you can do:

"# Never startle the dying with bright lights, harsh tones, or abrupt

movement.

"# Always identify yourself to the resident. Even if he/she knows you well,

he/she might not recognize you at this time.

"# Use a gentle voice and reassuring touch.

"# Be sensitive to any cues that might signal that there is something the

resident wants to resolve before he/she can let go. Offer support.

"# Consider the use of light massage and soothing music. Have family

members help to do this.

"# Ask the supervising RN if there are medications that might help relieve

the agitation.



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Withdrawal from the External World. As the end of life approaches, there is a feeling of detachment from the physical world and a loss of interest in things formerly found

pleasurable. There is a tendency to sleep more. If the resident has been active and

conversant, there will now be less desire for verbal communication. Interest in former

activities will cease. This is the beginning of letting go of life and preparing for death.

Days or hours before death, the dying resident becomes less and less responsive to

voice and touch and may not awaken. Sometimes, quite unexpectedly, the person may

appear well and even look as if he/she is going to recover. There may be periods

where the person seems lucid and coherent. This does not mean he/she will recover;

the person is still dying. Use this as a “window of opportunity” to help facilitate closure

for the dying resident, family members, and staff.

What you can do:

"# Always speak gently, and identify yourself before speaking, even if you

feel the resident cannot hear or understand you.

"# Continue bedside care. Make sure the resident is positioned

comfortably.

"# Presence and touch are the key gifts you can give during this time.

"# Be sensitive to the feelings of the dying resident and his/her family.

Watch for personal, religious or cultural cues that tell you what the

resident needs.

"# Dying requires energy and focus. Minimize unnecessary disturbances

and treatments. Do not force re-orientation and participation.

"# Remember that you are supporting the resident to “let go.”



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ACORN SESSION 3 – POST-TEST The following areas are affected during the dying process. Describe what occurs in each of these categories. Breathing __________________________________________________________ Skin temperature _____________________________________________________ Bowels and bladder _____________________________________________________ Appetite ______________________________________________________________ Consciousness_________________________________________________________ What are some things you can do when you notice some of these physical and mental changes in a dying person? Breathing ____________________________________________________________ Skin temperature _______________________________________________________ Bowels and bladder _____________________________________________________ Appetite ______________________________________________________________ Consciousness ________________________________________________________



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ACORN SESSION 4 Life-Prolonging Treatment and Futile Care

Learning Objectives "# Identify 3 types of life-prolonging treatment.

"# Define futile care.

Case Example Case 1. Mrs. Kukui is 92 years old and recovering from a hip fracture. She is expected to receive 2 months of rehabilitation at your facility before returning home. During one

of her treatment sessions she has a heart attack and stops breathing. Her living will

states that she wants no life-prolonging treatment if she has an incurable or irreversible

condition that will result in death or a persistent vegetative state. Case 2. Mr. Ahi is a 94 year-old resident with advanced Alzheimer’s disease. He can no longer eat or drink by himself and has lost his capacity to communicate or to make

decisions. He has had difficulty moving his bowels and was found have colon cancer.

The doctor suggests that he be transferred to the hospital to have surgery and radiation

therapy. His living will states that he wants no life-prolonging treatment if he has an incurable or irreversible condition that will result in death or a persistent vegetative

state. Case 3. Mr. Lumpia, an 89 year-old long term resident at your facility has come down with pneumonia. He has been suffering from chronic obstructive pulmonary disease and

is on oxygen. His living will states that he wants no life-prolonging treatment if he has an incurable or irreversible condition that will result in death or a persistent vegetative

state.



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Case 4. Mrs. Tempura is 67 years old and has been diagnosed with incurable liver cancer. The pain medicine makes her groggy and she sleeps much of the time but the

doctor feels that with good care she may live another 2 months. She has stopped

eating and drinking entirely and cannot be enticed to eat. Her living will states that she wants no life-prolonging treatment if she has an incurable or irreversible condition that

will result in death or a persistent vegetative state. Questions:

1. Does his/her advance directive apply in this case?

2. Would you recommend a life-prolonging treatment? If so, what would it be?

3. Could he/she be kept in the nursing home or would he/she be transferred to the hospital?

4. Could giving this treatment be considered futile care?

Life-Prolonging Treatments The following are examples of some of the common medical treatments used to extend

or sustain life in terminal conditions. Discussions regarding the risks and benefits of all life-sustaining treatments are the responsibility of the doctor.

"# Cardiopulmonary Resuscitation (CPR). Facilities usually have a “code sheet” for each resident that indicates if the resident want CPR in event that his/her heart

stops. When a resident is a “full code” and his/her heart stops, an ambulance must

be called and the resident transferred to an acute care facility. There, the heart is

“jump-started” with an electrical impulse, and manual compressions are

administered to the chest in an effort to restore it to its normal rhythm. Those who

receive CPR are often put on mechanical ventilators, or breathing machines, which

may conflict with their wishes not to have their lives prolonged. Consequently, the

may spend their final days in the hospital. Generally, CPR is not advisable for

people nearing the end of life because it rarely is successful. Also, CPR is a violent

procedure. The manual compressions to the chest can break the ribs of frail elders,

increasing pain and suffering of the elder if he/she does survive.



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"# Mechanical Ventilation. A mechanical ventilator is a machine that forces the resident to breathe, allowing the resident to remain alive indefinitely even if he/she

has lost the ability to breathe for him/herself. Once initiated, withdrawal of

mechanical ventilation is usually a difficult decision for family members. Legally,

withdrawing a ventilator is not murder. Just because it is started, does not mean it

must be continued.

"# Blood Transfusion. Transfusions include whole blood or blood products. Some people do not want whole blood, but will accept plasma or PROCRIT, a product that

increases red cell production. There comes a point at which blood transfusions no

longer improve the quality of the terminally ill person’s life. It may also be painful to

residents with fragile skin and veins.

"# Surgery. Before a surgery is considered, one should understand the risks and benefits of the surgery. Residents and their families should ask the purpose of the

surgery. Are there other, less invasive procedures that can increase comfort and

reduce pain? In terminal conditions, some surgical procedures are performed to

reduce pain and increase comfort (palliative) and are not seen to be curative.

"# Radiation. Radiation is often used in persons with cancer. The use of radiation or radioactive material can be helpful in reducing bone pain and inhibiting the growth of

tumors. Some side effects of radiation can be immediate; swelling and inflammation

around the site receiving radiation are common. A resident may go to an acute care

facility for radiation treatment and be returned to the nursing home for continued

care.

"# Antibiotics. Antibiotics have become a cornerstone of modern medicine. They are commonly given to treat many different infections. However, the use of antibiotics

should be carefully considered in terminal conditions.



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"# Nutrition (Food) and Hydration (Fluids). People at the end of life lose interested in eating. Even when a dying person has capacity to eat and drink, they may

choose not to. Forcing food when a person is dying and not hungry can increase

pain, result in aspiration (choking), and worsen the condition. Forcing fluids may

make the situation far worse by causing breathlessness, edema (swelling), ascites

(swelling of the abdomen), nausea, and/or vomiting. The main purpose of food in

terminal illness is enjoyment, not nutrition. Intravenous (IV) hydration is

inappropriate for someone whose swallowing is impaired because they are close to

death. At this time, many organ systems in the body are not functioning well. The

extra fluid imposed on the body at this time can produce swelling and congestive

heart failure.

"# Tube Feeding. Research suggests that the use of feeding tubes in patients with severe dementia is of questionable benefit. It is a controversial and ethical issue as

to whether continued tube feeding actually enhances the quality of life. Residents

who have difficulty swallowing, are losing weight, and have recurrent aspiration

pneumonia may be near death, particularly those with severe cognitive impairment.

Hawaii’s nursing home residents with severe cognitive impairment are among the

highest in the nation.

Futile Care Futile care is care that is not in the best interest of the resident. For example, if the

resident is very close to death, the forcing of food and water does little for the resident.

In fact, it can cause pain and it puts the resident at risk of aspiration. If the resident is

incontinent, the forcing of food and water will increase the amount of urine and feces

produced and put the resident at increase risk of skin breakdown. Similarly, the

administration of antibiotics for a painless infection at the end of life may not be in the

resident’s best interest.



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ACORN SESSION 4 – POST-TEST True or false.

T F

T F

Futile care is care that is not in the best interest of the resident.

Life-prolonging treatment always improves the quality of life.

Name 3 types of life-sustaining treatment.

1.

2.

3.



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ACORN SESSION 5 Advance Directives

Activity: Executing An Advance Directive. An Advance Directive is a written or spoken statement about future medical care. The

advance directive lets the doctor, family, and other members of the care team know

what to do if a resident becomes seriously ill or incapacitated and cannot speak for

him/herself.

A person needs to complete an advance directive while he/she is competent. According

to Hawai’i law, it does not need to be notarized. The person can:

"# Write down his/her preferences for care in the event he/she is incapacitated. (This

type of document was formerly called a living will.)

"# Appoint someone else to make decision about care in the event he/she is

incapacitated. (This type of document is sometimes called a durable power for

healthcare.)

In an advance directive you will be asked to give answers to these questions:

"# If you are incapacitated with little or no hope of recovery, and your heart stops, do

you want to be resuscitated (given CPR)?

"# If you are incapacitated with little or no hope of recovery, and you stop breathing, do

you want to be kept alive artificially with a mechanical ventilator?

"# If you are incapacitated with little or no hope of recovery, and you could no longer

feed yourself, do you want to be forced to take artificial nutrition (food) and hydration

(fluids)? (Unless you specifically state that you do not want to have artificial nutrition

and hydration in a terminal condition, then you will get it.)

$# If you are incapacitated, who do you want to make healthcare decisions for you?

$# If you are incapacitated and in pain, do you want pain medication?



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$# Do you have any ethical, religious, or spiritual instructions we should know about if

you were dying?

$# What else should be known in order to provide you the best end-of-life care?

Benefits of Advance Directives "# They Help Care Providers and Families To Know What To Do. Much of the

confusion surrounding treatment preferences at the end-of-life arises from dissention

among family members and lack of awareness of what the resident wants.

Sometimes, there may be questions about competency with regard to when the

advance directive was executed. Documenting wishes in advance takes the

guesswork out of knowing what an individual would have wanted in the event he/she

could no longer communicate. These discussions should be charted in the medical

record. Discussing choices in advance of critical illness is important. An advance

directive is the best means to make sure that a person’s wishes are carried out.

"# They Help To Minimize Futile Care. Advanced technology makes it possible for individuals with little or no hope of recovery to be kept alive for months or even

years. Respecting wishes for end-of-life preferences will often reduce the incidence

of futile care and unnecessary transfers to acute care facilities.

"# Advance Directives May Include Spiritual Instruction. Advance directives may also include ethical, religious, and spiritual instructions (although documenting this

type of instructions is not mandated by law).

"# Advance Directives Do Not Need To Be Notarized. Your signature on a written advance directive, and witnessed by 2 friends, is adequate.

"# Advance Directives May Be Given Orally. Even though oral instructions regarding healthcare decisions (from a person who has decision-making capacity) are

considered legal, it is best to have the wishes documented. A copy should be easily

accessible in the medical record. Family members should also have a copy.



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Ask directly about the resident’s concerns and preferences for care. Use open-ended questions to find out what the resident needs. Examples of open-

ended questions include:

"# What do you expect in the next weeks and months ahead?

"# What are you feeling about your circumstances now?

"# What kind of care would make you most comfortable now?

"# What would you like to accomplish before you die?

Make lots of copies. A copy of the advance directive should be kept in the resident’s chart. Copies should be given to the attending physician, family members, and others.

A copy should be sent with the resident if he/she is transferred out of the nursing home.

Questions residents and families may ask when considering life-prolonging treatments

"# What problem or symptom would this treatment or procedure address?

"# What is involved?

"# What are the side effects?

"# What will happen if the treatment or procedure is not done?

"# What are the benefits and the risks?

"# Will the treatment or procedure improve the quality of life or merely

prolong it?



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ACORN SESSION 5 – POST-TEST True or false. Advance directives…

T F

T F

T F

T F

T F

If a resident is near the end of his/her life and gets an infection, it is always best to

make the resident take antibiotics.

If a resident is near the end of his/her life and stops eating, it is best to force feed

the resident.

An advance directive includes instructions about how you want to be treated at the

end of life. It also can appoint someone to make decisions for you if you cannot.

An advance directive must be notarized.

An advance directive should be placed in the medical record and copies should be

given to family members.



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ACORN SESSION 6 Cultural Beliefs in Death and Dying Learning Objectives "# Discuss how cultural beliefs can impact death and dying.

"# List 2 culturally related end-of-life rituals from your own culture.

Case Studies 1. Mr. Daikon is 86 years old and clearly dying of cancer. His wife tells the staff that she

does not want him to know that he is terminally ill and asks the staff not to tell him.

"# How would you interpret this behavior?

"# What would you do or say?

2. Mrs. Kalamansi had a severe stroke and is in your facility. She can still

communicate and seems able to make decisions, but refuses to talk to the doctor

without her entire family present.



3. Mr. Avocado is dying. His children live on the mainland, and Mr. Avocado has not

told them of his condition. “I’ve taken care of myself my whole life and I don’t want to be

dependent on my kids. Besides, it’s none of their business!”



4. Mrs. Bangos is 80 years old. Her emphysema is so bad that she cannot move

without great distress. Her doctor has recommended hospice care, but the family is

against it. “You should be doing everything to save her.”



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5. Mrs. Bibinka is very close to her family, but they are away on vacation this month. In

the last week, you’ve seen her decline, and you feel that she may be close to death.

Every time she wakes up, she says “Where’s my daughter?”



Cultural Beliefs that Impact Death and Dying Different cultures have different beliefs and customs that may affect their practices

related to death and dying. Some of the beliefs are described here.

Filial Piety. Filial piety refers to the loyalty and devotion of children toward their parents. In all cultures, children are expected to respect their elders. Filial piety is

encouraged by many religions as well. For example, the Christian and Jewish faiths are

familiar with the Commandment, “Honor thy father and thy mother.” Similarly,

Confucianism, Buddhism, Islam, and Hinduism emphasize the duty of children to love,

respect, and support their parents.

How does filial piety affect death and dying?

"# There may be an expectation that the family will care for its sick and dying members.

When family member feel that they should be the ones providing care, there may be

feelings of guilt. Finding ways in which family members can be part of the team can

help to alleviate this burden.

"# A dying resident may try to “hang on” until all the children come to say good-bye.

"# The first-born, and in particular the first-born son, may bear certain responsibilities

for decision-making and leadership. Other family members may have prescribed

roles too. Find out who the decision makers are, and make certain they are included

in conversations regarding the welfare of the resident.



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"# Children may want to protect an elderly parent from “bad news.” For example,

children might not want a parent to know that he/she has cancer. Knowing this news

might cause the parent to become depressed or give up hope. Even if the parent

suspects or knows the diagnosis, he/she may pretend not to know it, and the subject

is not discussed. In a Western system that stresses individual autonomy, this may

create conflict among family members and with nursing home staff.

"# Wanting to protect a parent from “bad news” also might postpone a request for

hospice services. If the dying person and family do not want to admit that death is

coming, they cannot take advantage of hospice services.

"# Requests for organ donation and autopsy may be refused. Organ donation and

autopsy, which involve cutting, may seem disrespectful of one’s parents and

ancestors.

Collective vs. Individualistic Decision Making. Cultures differ in how decisions are made. In collective cultures, decisions are made for the good of the group. In

individualistic cultures, individuals are encouraged to make decisions independently.

When thinking about this concept, remember that there are no absolutes; cultures and

individuals may exhibit both collective and individualistic tendencies. In general,

though:

"# Individuals from collective cultures usually ask their family members to hear

information and help make decisions. In some cases, an elder may defer decision

making to the spouse, to the eldest son, to another child, or to the person in the

family deemed most capable of serving in this role.

"# Individuals who are brought up to make decisions independently usually want to

hear information about their diagnosis directly from the physician. They may want to

make decisions by themselves and then tell others what they intend to do. They

may decide which family members should know of a decision and which shouldn’t.

Many people from individualistic cultures, however, consult family members and

loved ones about end-of-life issues.

Not Wanting to Burden Others or Ask for Help. In many cultures, “being a burden” on others is painful to think about. To be entirely dependent for care can be emotionally



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difficult. Many individuals talk about their reluctance to burden others. This is seen in

many cultures for different reasons. Whatever the reason, reluctance to burden others

may affect a dying person’s willingness to accept help.

"# Individuals from individualistic cultures may not want help, even from the nursing

home staff. They may become angry when help is offered, trying to maintain

independence at all costs. It is important to maintain the dignity of the resident at all

times, and acknowledge the difficulty that “being a burden” brings.

"# Individuals from collective cultures may see their children’s lives as more important

than their own. They know their children are busy, and may not ask for them to visit

or to help. Instead, they may suffer in silence.

"# Some people do not want to burden physicians or nurses unless they have a “big”

problem.

"# Some people will accept pain and suffering as something they deserve or can learn

to live with.

"# Some people may not know how to ask for help and need to be encouraged to do

so.

Should We Talk About or Plan for Death? Some cultures are not sure if it’s a good idea to talk about or plan for death. This might translate into a reluctance to complete

advance directives or use hospice services.

"# Some individuals believe that completing an advance directive is unnecessary or

would show a lack of faith in God’s plan.

"# People who believe in individual karma may feel that advance directives are

unnecessary or represent an attempt to circumvent karma.

"# Some individuals are more fatalistic than others. They may feel that completing an

advance directive would tempt fate and cause death to happen.



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Experience With and Respect For Healthcare. Different cultures have different experiences with healthcare and different levels of respect for hierarchy and authority.

This may cause some to “do whatever the doctor says” and may cause others to

question the doctor and seek other opinions.

"# In many cultures, the physician is put on a pedestal, and individuals may defer to

him/her in all decisions. Instead of describing their needs or misgivings, they may

ask the doctor to decide, saying, “The doctor knows best.” If the doctor doesn’t have

all the information about the dying person’s wishes, however, he/she might not know

best.

"# New immigrants may come from communities that don’t have advanced life-support

capabilities. They might not know what CPR is or what a ventilator is. They may

insist that the doctor “do everything” without realizing that hospitals can keep people

alive forever, even in a vegetative state.

"# People who have experienced discrimination in health care may be reluctant to plan

for death. They may fear that completing an advance directive or to use hospice

services might justify the withholding of needed treatments.

"# Being afraid to die might result in either refusal to have conversations around end-of-

life issues or a need to “fight death at any cost.” Being sensitive to the residents’

emotional responses can help to pinpoint areas of concern. Obtain the help of the

nurse supervisor in difficult cases.

Cultural Rituals at the End of Life EVERY culture has its own rituals for the end of life. These include culturally specific

prayers, sacraments, ways to honor the person’s life, and ways to dispose of the

person’s dead body. If possible, learn about the culturally related end-of-life beliefs and

practices of your residents. Work with the resident’s family and your supervisor to see

that these rituals are respected to the extent possible in your facility.

Everyone experiences death. Therefore, cultural and religious traditions see death is a

natural part of the life cycle. When death is imminent, it is OK to let the process take its

natural course. Part of your job is to help alleviate the fear and discomfort surrounding

the dying process.



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Points to Remember Cultural beliefs that may impact death and dying include: "# Filial piety – the obligation of children to care for their parents.

"# Individual vs. collective decision-making – more pronounced in

certain cultures such as Asian and Pacific Islanders

"# Not wanting to burden others or ask for help - seen in both

“individual” and “collective” cultures.

"# Talking about or planning for death – some cultures believe that

planning ahead or talking about death may hasten it.

"# Experience with and/or respect for healthcare – may include feelings

or past experiences of discrimination.

"# Culture and religion are often hard to separate.



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ACORN SESSION 6 – POST-TEST

True or false? How culture influences choices…. T F T F T F

In some cultures, children may not want to give parents “bad news” about their health or prognosis. Some people may be reluctant to talk about or plan for death” because they don’t want to jinx themselves, tempt fate, or cause bad luck. Some family members may insist that a doctor “do everything” without realizing that hospitals can keep people alive forever, even in a vegetative state, and that this may prolong suffering.

List 2 end-of-life rituals from your culture.

1.

2.



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ACORN SESSION 7 Communicating with Residents, Families, and Staff “For things to reveal themselves to us, we need to be ready to abandon our views about

them.” Thich Nhat Hanh

Learning Objectives "# Understand the importance of end-of-life conversations for residents and families.

"# Review the 5 steps to having a “Compassionate Conversation.”

Case Studies Mr. Lychee has been getting weaker and weaker. His appetite has diminished and he is

sleeping a good deal of the time. You notice that his condition has deteriorated. The

RN tells you that he may have only a few more weeks to live. Mr. Lychee has lived at

your facility for 7 years. You have had many close conversations during this time. He

confides in you that he feels that he may be dying, although no one has said anything to

him about his condition. He decides to share his feelings, questions, and concerns

about dying with you.

1. Would you feel comfortable talking to Mr. Lychee about death? Why or why not?

2. How would you encourage him to share his concerns with you?

3. In what ways would you make Mr. Lychee feel comfortable?

4. What kind of body language would be most helpful to promote sharing?

5. Where, in your facility, would be the best place to have this conversation?



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The Importance of Good Communication Communicating with others is a highly sophisticated and involves many things.

Communication includes voice, tonality, body language, facial gestures, posture, and

more. It is far more than what you “say” to another person. Miscommunication

between the resident and the nurse, between staff and family members, and even

between the health care team, can have disastrous results. The easiest way to

safeguard against miscommunication is to listen attentively and compassionately the

first time.

Good communications practices include:

!"Demonstrating respect for personal, cultural, and religious values

!"Acknowledging the other person’s views and feelings

!"Listening attentively and responding empathically

!"Knowing how to tactfully address difficult issues and minimize conflict

Nursing home staff, family members, and residents all have the need to express their

feelings safely. Staff should not have to feel there is a risk to their job security when

communicating concerns openly. Residents and their families should not feel that care

will be compromised by expressing their feelings honestly. The facility should have

“safe places” for individuals to share their concerns privately and with confidence.

Talking to Residents and Families about Death and Dying Although many health care workers feel uncomfortable talking about death and dying, it

is important to learn to do this.

The majority of people who are dying have a need to talk about it. Becoming skilled in

the art of conducting a “Compassionate Conversation” can help. Compassionate

Conversations should be held with residents whenever there is something important

and meaningful to talk about.



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Serious illness and death have a profound effect on the family members. They need to

understand what’s going on with the resident. Sometimes, family members are “left out”

of conversations about death and dying. Family members may complain if they don’t

understand what’s going on and if communication isn’t compassionate. Thus, it is

important to keep the family informed about the resident at all times, and especially

throughout the dying process. Compassionate Conversations should be held with

family members whenever there is something important and meaningful to talk about.

Often, as death nears, important decisions must be made and personal issues may

want to be addressed, both by the resident and his/her family members.

Compassionate Conversations can be held with residents and family members together.

Their religious or cultural tradition may give structure and cues as to how to frame a

conversation and engage the dialogue.

How to Have a Compassionate Conversation There are 5 steps to a Compassionate Conversation:

"# Stop – give the person who is speaking your undivided attention.

"# Look – look directly at the person who is speaking. Avoid distractions.

"# Listen – listen empathically as well as analytically

"# Respond in ways that validate, clarify, and extend the conversation

"# Maintain confidentiality

Respond in ways that validate, clarify, and extend the conversation. As the advocate for the dying resident, part of your job is to help the resident express feelings

and concerns. It is difficult to refrain from talking. We see ourselves as “helpers” and

we want to help by talking and trying to make things better. But in Compassionate

Conversations, your responses should lead to further sharing. Try to:

"# Validate that the resident’s feelings and concerns are common for many who are

dying and that there is nothing wrong with having these feelings.

"# Restate what you’ve heard, felt, or seen.



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"# Ask an open-ended question that will lead to more sharing. An open-ended

question is one that cannot be answered with a word or two, but requires a

longer answer.

"# Do not make judgments, even if it goes against your own beliefs.

"# Refrain from trying to “fix” things.

"# Refrain from telling the resident or family member what to do.

"# Refrain from telling the resident or family member what you would do in this

situation.

"# Assure the resident and family members that you are there for them.

Don’t give meaning to another’s experience. As you support and value all viewpoints,

your caring presence brings unity instead of diversity. Here are some examples of

responses that validate, clarify, and extend the conversation: Finding out Values and Feelings. To find out values and feelings use open-ended questions, and restate what you hear, feel, and see. Most importantly, validate the

feeling of the grieving person. This helps to provide assurance.

Here are some examples of responses that validate, clarify, and extend the

conversation.

"# Use open-ended questions “What are you feeling now?” “What kinds of things worry you?” “What are you feeling now about your illness?

“What do you want to tell your family or doctor?”

“What else can I do to help?”

"# Restate what you hear, feel, and see “You sound angry.” “I hear sadness in your voice.”



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“I’m not sure, but it sounds like you might feel some shame about being here right

now.” “It sounds like you will miss your family very much.”

"# Validate “It is normal to have these feelings.” “It is not unusual to feel that way.” “If this happened to me, I would feel sad too.”

Tips:

!"Ask directly about the resident’s concerns.

!"Offer to talk about what most concerns the resident, including spiritual concerns.

!"Elicit the resident’s concerns about the illness and prognosis.

!"Have discussions early and often.

Maintain confidentiality. Confidentiality is an essential component of any intimate and trusting relationship. What is experienced within the context of the caring relationship

should not be discussed with others, unless it is pertinent to the plan of care and it is

understood that it can be shared. Unless you are required by law to report particular

information that is being disclosed, such as a resident at risk for self-injury or injury to

another, do you very best to maintain confidentiality. Keeping confidentiality is essential

for helpers in all professions. It protects the individual you are helping and increases

the level of trust between you.

Compassionate Conversations, in which you “Stop, Look, Listen, Respond, and

Maintain Confidentiality” can take place anywhere in the facility. Be prepared to have a

Compassionate Conversation with residents at the bedside, in the activities room, or in

the dining room. Never force a resident to talk. But if the resident wants to talk,

encourage it, wherever and whenever he/she feels like it.



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Above all, remember to bring your “best self” to any interaction. People seem to sense

the intention of another, well before the actual conversation takes place. Be authentic.

Do not try to pretend to be concerned or interested if you are not. It will show.

Compassionate conversations result when one acts out of genuine concern for the well

being of another.

Points to Remember 5 Steps to a Compassionate Conversation: 1. Stop – give the person who is speaking your undivided attention

2. Look – look directly at the person who is speaking. Avoid distractions.

3. Listen from the heart – display empathy when listening. Don’t problem solve.

4. Respond - respond in ways that validate, clarify, and extend the conversation.

5. Maintain confidentiality* – know that this is a special time of trusted sharing.

(*unless the resident’s safety and well-being are at risk).



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ACORN SESSION 7 – POST-TEST There are 5 steps to Compassionate conversation. Here are the first letters to help you

identify the 5 steps.

S _____________________________________

L _____________________________________

L _____________________________________

R _____________________________________

MC _____________________________________



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