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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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
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.

                                                                                            2
                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
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.




                                                                                               3
                                  Appropriate End-of-Life Care of Residents in Nursing Homes
                                                           (ACORN) UH Center on Aging
            Dying Trajectories                                 Conditions

Sudden Death: Dying is sudden and              Trauma
unexpected ( ~7% of all deaths).               Aneurysm or fatal stroke
                                               Homicide and suicide
                                               Heart attack
Organ System Failure: Residents may
decline slowly over many years, marked         Chronic heart failure
by peaks and valleys, and it is difficult to   Chronic obstructive pulmonary disease
estimate the time of death (~16% of all        Renal disease
deaths).

Frailty: A slow steady decline in health       Dementia, including Alzheimer’s disease
and function that could go on for many         Osteoporosis
years (~47% of all deaths).                    Arthritis
                                               Autoimmune diseases
Terminal Illness: Residents may
experience a rapid decline and then die in     Cancer
3-6 months (~22% of all deaths).               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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
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.



                                                                                          5
                                  Appropriate End-of-Life Care of Residents in Nursing Homes
                                                           (ACORN) UH Center on Aging
   ♦ 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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
   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.
                                                                                                                             7
                                              Appropriate End-of-Life Care of Residents in Nursing Homes
                                                                       (ACORN) UH Center on Aging
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.




                                                                                           8
                                 Appropriate End-of-Life Care of Residents in Nursing Homes
                                                          (ACORN) UH Center on Aging
ACORN SESSION 1 – POST-TEST

1. Name the 4 dying trajectories.

         S____________________________

         O____________________________

         F____________________________

         T ____________________________


True or False


T         F      Most deaths in America occur in institutional settings, including hospitals
                 and nursing homes.


T         F      Hospice care cannot be provided in nursing homes.


T         F      Hospice care pays attention to pain and symptom control, as well as the
                 dying person’s feelings and spiritual needs.


T        F       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



                                                                                                   9
                                           Appropriate End-of-Life Care of Residents in Nursing Homes
                                                                    (ACORN) UH Center on Aging
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?




                                                                                         10
                                  Appropriate End-of-Life Care of Residents in Nursing Homes
                                                           (ACORN) UH Center on Aging
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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                                         Appropriate End-of-Life Care of Residents in Nursing Homes
                                                                  (ACORN) UH Center on Aging
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.



                                                                                               12
                                    Appropriate End-of-Life Care of Residents in Nursing Homes
                                                             (ACORN) UH Center on Aging
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
                                                                                          13
                                  Appropriate End-of-Life Care of Residents in Nursing Homes
                                                           (ACORN) UH Center on Aging
   ♦ 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.



                                                                                          14
                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
♦ 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
                                                                                          15
                                 Appropriate End-of-Life Care of Residents in Nursing Homes
                                                          (ACORN) UH Center on Aging
   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.

                                                                                         16
                                  Appropriate End-of-Life Care of Residents in Nursing Homes
                                                           (ACORN) UH Center on Aging
♦ 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.




                                                                                       17
                                Appropriate End-of-Life Care of Residents in Nursing Homes
                                                         (ACORN) UH Center on Aging
                                         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.




                                                                                         18
                                  Appropriate End-of-Life Care of Residents in Nursing Homes
                                                           (ACORN) UH Center on Aging
ACORN SESSION 2 – POST-TEST
True or false? Issues of pain control…


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


T        F        Most pain can be controlled.


T        F        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.


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




                                                                                                   19
                                            Appropriate End-of-Life Care of Residents in Nursing Homes
                                                                     (ACORN) UH Center on Aging
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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                                 Appropriate End-of-Life Care of Residents in Nursing Homes
                                                          (ACORN) UH Center on Aging
    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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                                    Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                  Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
       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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                 Appropriate End-of-Life Care of Residents in Nursing Homes
                                                          (ACORN) UH Center on Aging
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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
 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 ________________________________________________________



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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                                           Appropriate End-of-Life Care of Residents in Nursing Homes
                                                                    (ACORN) UH Center on Aging
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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                  Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
ACORN SESSION 4 – POST-TEST


True or false.



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




T       F         Life-prolonging treatment always improves the quality of life.




Name 3 types of life-sustaining treatment.


1.


2.


3.


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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                                            Appropriate End-of-Life Care of Residents in Nursing Homes
                                                                     (ACORN) UH Center on Aging
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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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                  Appropriate End-of-Life Care of Residents in Nursing Homes
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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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                                 Appropriate End-of-Life Care of Residents in Nursing Homes
                                                          (ACORN) UH Center on Aging
ACORN SESSION 5 – POST-TEST
True or false. Advance directives…



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.


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


T      F         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.


T      F         An advance directive must be notarized.


T      F         An advance directive should be placed in the medical record and copies should be
                 given to family members.




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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                                           Appropriate End-of-Life Care of Residents in Nursing Homes
                                                                    (ACORN) UH Center on Aging
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.
       ♦ How would you interpret this behavior?
       ♦ What would you do or say?


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!”
       ♦ How would you interpret this behavior?
       ♦ What would you do or say?


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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                                     Appropriate End-of-Life Care of Residents in Nursing Homes
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       ♦ How would you interpret this behavior?
       ♦ What would you do or say?


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?”
       ♦ How would you interpret this behavior?
       ♦ What would you do or say?


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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                                  Appropriate End-of-Life Care of Residents in Nursing Homes
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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        In some cultures, children may not want to give parents “bad news”
               about their health or prognosis.

T     F        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.

T     F        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.


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




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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                                           Appropriate End-of-Life Care of Residents in Nursing Homes
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ACORN SESSION 8
After Death Care: Handling Grief


There is no “recovery” from grief, for grief is not an illness.


Learning Objectives

♦ Understand the nature of loss and terminology of grief.
♦ Understand and acquire skills that will assist in providing comfort to the grieving.
♦ Review the importance of bereavement care for surviving family, residents and staff.


Case Study
Mrs. Bibinka and Mrs. Furikake have been roommates for 4 years. Both women have
mild dementia but are still able to participate in activities and eat independently. At
lunch one day, Mrs. Bibinka complained of not feeling well and was wheeled back into
her room. She died shortly afterwards.


When Mrs. Furikake returned to her room she found Mrs. Bibinka’s bed empty. Nothing
was said to her about her roommate’s absence. Three days later, Mrs. Chung moved in
to occupy Mrs. Bibinka’s bed.


The staff notices Mrs. Furikake becoming increasingly combative and agitated. She
seems more confused and refuses to eat.


   1. How would you interpret Mrs. Furikake’s behavior?
   2. How do you help residents with grief? How do you know when someone is
       grieving?
   3. Do you think that Mrs. Furikake should have been told of her roommate’s death?
       If so, who should have this responsibility?
   4. How do you help co-workers with grief?

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   5. Does your facility have a bereavement policy to help residents and staff deal with
       grief?


Grief, Grieving, Mourning, and Bereavement

Grief, grieving, mourning, and bereavement are terms that are often used
interchangeably, but there are some distinct differences.


Grief is defined as the deep and poignant distress caused by the loss of a loved one.
♦ Grief is intimate, personal, and intense.
♦ Grief affects us physically, emotionally, socially, mentally, and spiritually.


Grieving is defined as the process of feeling and experiencing grief, of coming to an
acceptance of the death, and to seeing the reemergence of hope.
♦ Grieving is an internal process (or journey) that takes a long time to complete.
♦ Like any process, grief may be experienced and expressed differently at different
   points throughout the journey of grieving.
♦ Grieving carries the potential for transformation. As one proceeds through the
   grieving process, beliefs, values, and perceptions of life may change.

Mourning is both the outward expression of an inner state of grief (similar to “grieving”)
and the display of the customary signs of grief for a death (such as rituals surrounding a
death). Because people in all cultures die, all cultures have rituals and guidelines for
acceptable ways to mourn. In Western culture, the most familiar mourning ritual is the
funeral or memorial service. Wearing black for an extended period of time or wearing a
visible symbol, such as a ribbon or armband, alerts others that an individual is
mourning. Mourning allows an opportunity to “give voice” to one’s inner feelings of pain,
anguish, despair, sadness, and anger, and to release them. The words “grieving” and
“mourning” often are used interchangeably to refer to the expressions of grief.




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                                  Appropriate End-of-Life Care of Residents in Nursing Homes
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Bereavement, or the state of being bereaved, is the encompassing experience brought
about by the loss of a loved one by death. Nothing is spared. The past, present and
future are all impacted by the loss.


Common Expressions of Grief
Grief is expressed in different ways. Some people want to “talk out” their grief. Others
may keep to themselves for a period of time. Some people may be very emotional or
cry a lot. Others may not shed any tears. Returning to daily routines as soon a
possible may be comforting to certain people. Others may withdraw and become
introspective.


Regardless of expression, remember that grieving is about change and movement.
Standing still in the face of change takes a tremendous amount of resistance and can
lead to illness or stagnation. Thus, helping others to find safe and acceptable ways to
express their grief and move through their grieving process is important.


Each person’s journey of grieving is unique. But there are some common emotional
expressions of grief. These include:

♦ Sadness. Feelings of sadness may seem overwhelming. Waves of sadness are
   extremely common and sometimes can seem unbearable. Over time, however, the
   intensity of sadness lessens. Remember, however, that most people never “get
   over” their loss completely.


♦ Loneliness. The loss of someone close causes feelings of loneliness. For
   example, a long-time resident who has become endeared to the staff will be missed.
   Going in to a deceased resident’s room may trigger feelings of grief. Evenings and
   weekends may be the most difficult, as there is less activity


♦ Anger. Family members may express anger toward the deceased, the doctor,
   and/or the nursing staff. Do not take this anger personally but understand it as a
   normal expression of grief.

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                                  Appropriate End-of-Life Care of Residents in Nursing Homes
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♦   Guilt and Blame. Family members and staff may go through a series of “if onlys.”
    Thoughts of “I should have done more” or “If only I had…” are common. Blame may
    be directed at others or at oneself. These thoughts are normal. But if they continue
    to be prominent, they may result in a lack of self-forgiveness and complicate grief.


♦ Anxiety. The death of a resident may cause anxiety among surviving residents.
    These feelings are often accompanied by intense anxiety over what the future may
    hold. Surviving residents in general and roommates in particular who show anxiety
    after a death should be given an opportunity to express grief.


♦ Relief. If the death has followed a long illness, there may be relief it is finally over.
    This is normal. Family and staff may feel guilty, however, if they feel relieved and
    may be reluctant to acknowledge that feeling or share it with others.


♦ Thankfulness. Some people may feel that the death was "a blessing." This does
    not mean there will not be sadness and readjustment. People need to be given
    permission to feel OK about a death. A death can be celebrated as individuals
    express thanks for knowing the person who died and for the time spent together.
    Gratitude and thankfulness are great healers. But without acknowledgment of a
    death, this is impossible.


♦ Emotional Ups and Downs. The initial reaction to a death may be shock and
    denial, particularly when death is sudden. Nursing staff who experience a series of
    deaths may have emotional ups and downs, particularly, if they are not allowed to
    talk about the deaths.


There are several physical responses too. These include:


♦ Insomnia and Bad Dreams. Insomnia and bad dreams are common, particularly
    when a member of the nursing staff experiences the death of a close resident for the


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   first time. Vivid dreams involving death or about the deceased may occur and can
   be upsetting. These are a normal part of adjustment.


♦ Physical Complaints and Loss of Appetite. Physical complaints are common,
   such as stomachache and tightness in the chest and throat. A bereaved person
   may comment that his/her stomach feels like “it is tied in knots.” There may be a
   loss of appetite.




♦ Confusion. The initial intense emotions of grief temporarily affect the way the mind
   and body functions. These are normally temporary conditions. If they persist, this
   may signal depression and a need for professional help.


Misperceptions About Grief
There are a number of commonly held misperceptions about grief, which can present
significant barriers to aiding someone who is bereaved. The statements below are not
helpful!


♦ “You should be over this by now.” WRONG! Grieving people need a lot of
   support over a long time. Some cultures have a set period of mourning, after which
   the person is expected to get on with life. Although these periods of mourning can
   help facilitate healthy mourning, they may overlook the fact that everyone’s grief is
   unique and is influenced by many factors. It is generally true that the passage of
   time tempers the extreme feelings of sadness, but the feelings may never disappear
   entirely. Experts now believe that one does not “get over” the loss, but rather adapts
   and integrates the loss into their lives.

♦ “Time heals all wounds.” WRONG! Time and eventfulness may never “fill up” the
   emptiness caused by the loss of someone close to us, but it can temper the harsher
   feelings that come in the first year of grief.




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                                   Appropriate End-of-Life Care of Residents in Nursing Homes
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♦ “If you’re not crying, you’re not really grieving.” WRONG! Although western
   culture has become much more supportive of public displays of emotion, there are
   people who do not cry after the death of someone they love. Although the majority
   of these appear to be men, some women do not express their emotions through
   crying either. Additionally, older people may be more reserved about public
   expressions of emotion. To an observer, it may seem as if they are “blocking” their
   feelings. In the journey of healing through grief, crying does not necessarily mean
   that a person is getting better. Although crying readily expresses emotion and
   releases energy, crying in and of itself does not help to complete the tasks
   necessary to reinvest in life. Some people can, and do, express a great depth of
   emotion and never cry.


♦ “Men are not very good at grieving” and “Real men shouldn’t cry.” WRONG!
   There is often a gender bias with regards to experiencing grief and expressing
   emotions. These stereotypes often affect the way men and women feel about
   dealing with a loss. Oftentimes, men feel restricted from sharing because of social,
   gender, or cultural expectations. Women often are seen as more ready to accept
   help and express emotion, two things that are critical in the process of grieving.
   Since men are perceived as less willing to accept help and express their emotions in
   a time of loss, they are seen as having more difficulties in dealing with their grief.
   However, this generalization is not always true and this stereotype is not helpful.



Keep in mind, however, that each person’s grief is unique. Experiences and
expressions of grief are as individual as fingerprints. Gender, culture, personality,
earlier losses, beliefs, values, and religion are among the many factors that influence
the way in which we grieve. There is no “right” way to grieve and no specified length of
time required for the grieving process.


Should There Be a Service?

This depends entirely on the facility. Consider having a monthly, quarterly, or yearly
service to honor the lives of residents who have died. Discuss what a policy on

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bereavement care at your facility should include. Decide whether or not this should be
“open” to residents and families, or just to staff so they can deal with their grief. Discuss
having a “memorial board” in which photos of recently deceased residents are placed
with a short story about who they were. You may want to solicit family participation and
permission when deciding the course of action your facility should take. Consider asking
the residents who are cognitively intact what they would want.


Bereavement Care in the Nursing Home

Facilities differ greatly in how family members, staff, and surviving residents are cared
for after a death occurs. In some facilities, very little is done. Post-mortem care is
given, and the body is taken to the mortuary or morgue. Staff may have little time or the
means to express their grief and feelings about the deceased resident. Family
members may not have personal time to grieve at the bedside. Surviving residents and
even roommates may not be told that the death has occurred. Sometimes, a new
roommate moves in to replace the deceased resident, and little or nothing is said.


Other facilities may notify all residents of a death in the facility and even offer a
memorial service to which residents and staff are invited. Some facilities use the
“coconut wireless” to communicate to staff and residents that a death has occurred.
This informal system is often in place even when a facility’s policy is to be “silent” on the
matter.




                                                                                          58
                                   Appropriate End-of-Life Care of Residents in Nursing Homes
                                                            (ACORN) UH Center on Aging
ACORN SESSION 8 – POST-TEST

List 2 common expressions of grief.

1.

2.

True or false? Perceptions of grief

T     F       Time heals all wounds.

T      F      If you’re not crying, you’re not really grieving.

T      F      Real men shouldn’t cry.




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




                                                                                                    59
                                             Appropriate End-of-Life Care of Residents in Nursing Homes
                                                                      (ACORN) UH Center on Aging

				
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