Hospice Palliative Care

Elective I (Hospice Palliative Care)

UNIT IV. PREPARING FOR CAREGIVING

A caregiver is anyone who provides help to another person in need. Caregivers provide support to
someone who needs help. Learning about being a caregiver may help you provide the care your friend or loved
one needs. Usually, the person receiving care has a condition such as dementia, cancer, or brain injury and
needs help with basic daily tasks. Caregivers help with many things such as: grocery shopping, house cleaning,
cooking, shopping, paying bills, bathing, using the toilet, dressing, and eating.

People who are not paid to provide care are known as informal caregivers or family caregivers. The
most common type of informal caregiving relationship is an adult child caring for an elderly parent. Other
types of caregiving relationships include:

• adults caring for other relatives, such as grandparents, siblings, aunts, and uncles
• spouses caring for elderly husbands or wives
• middle-aged parents caring for severely disabled adult children
• adults caring for friends and neighbors
• children caring for a disabled parent or elderly grandparent

ADVANCE CARE PLANNING

Knowing and understanding your loved one’s values and wishes will be important as you become
responsible for making decisions for them. Advance care planning is the process that allows you to make
decisions about the care you would want to receive if you happen to become unable to speak for yourself.
Advance directives are tools that enable people to write down their preferences on a legal form and appoint
someone to speak for them if they are no longer able. A living will, healthcare power of attorney, financial
power of attorney, and a plan for funeral arrangements can help ensure peace of mind for your loved one and
for you, the caregiver.

HOME SAFETY

Hazards in the home are major causes of falls, fires, poisoning, and other accidents, such as those caused by
improper use of household equipment (e.g., tools and cooking utensils). The appraisal of such hazards and
suggestions for remedies is an essential nursing function. Many caregivers are supporting and caring for loved
ones in their own homes, while others are caring for loved ones who are living in their own homes. Typically,
most homes are not designed for caregiving.

You may need to make some changes for the comfort and safety of all who live there, keeping these points in
mind:

1. Safety of Client and Environment

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• Walkways and stairways (inside and outside): Note uneven sidewalks or paths, broken or loose steps,
absence of handrails or placement on only one side of stairways, insecure handrails, congested hallways
or other traffic areas, and adequacy of lighting at night.
• Floors: Note uneven and highly polished or slippery floors and any unanchored rugs or mats.
• Furniture: Note hazardous placement of furniture with sharp corners. Note chairs or stools that are too
low to get into and out of or that provide inadequate support.
• Bathrooms: note presence of grab bars around tubs and toilets, nonslip surfaces in tubs and shower
stalls, handheld showerhead, adequacy of night lighting, need for raised toilet seat or bath chair in tub or
shower, ease access to shelves and water temperature regulated at a maximum of 49 degree Celsius (120
C).
• Kitchen: Note pilot lights (gas stove) in need of repair, inaccessible storage areas, and hazardous
furniture.
• Bedrooms: Note adequacy of lighting, in particular the availability of night-lights and accessibility of
light switches, ease of access to commode, urinal, or bed pan, and need for hospital bed or bed rails.
• Electrical: Note unanchored or frayed electrical cords and outlets that are overloaded or near water.
• Fire protection: Note presence or absence of smoke detectors, fire extinguisher, and fire escape plan,
improper storage of combustibles (e.g., gasoline) or corrosives (e.g., rust remover).
• Toxic substances: Note improperly labeled cleaning solutions.
• Communication devices: Note presence of method to call for help, such as telephone or intercom in the
bedroom and elsewhere (e.g., kitchen), and access to emergency telephone numbers.
• Medications: Note medications kept beyond date of expiration, adequacy of lighting for medication
cabinet or storage, and method of disposal of sharp objects such as needles used for injections.

If your loved one or friend is disabled, you will want to ensure that he or she:

• Uses a cane or walker, if needed.

• Has a clear path through each room, that there are no rugs or raised room dividers to trip over, and no
slippery floors. You can carpet the bathroom with all weather carpeting to help prevent falls. This can be
pulled up in sections, if it is wet.
• Is secure in his or her wheelchair. If your loved one or friend is weak, a tray that attaches to the
wheelchair can prevent falls and provides a place for your loved one or friend's drinks, magazines, etc.
• Cannot fall out of bed. If the bed does not have guardrails, you can place the wheelchair or other
guards next to the bed, and position your loved one or friend in the middle of the bed so that she or he
can turn over without fear of falling.

2. Equipment

Does your loved one or friend need;

• A hospital bed or other special type of bed?

• Walker and/or cane?
• Wheelchair?
• Bedside commode?
• Lift?
• Oxygen?

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3. Mobility

• Can a wheelchair fit through the doorways?

• Is a ramp needed on stairs?
• Is it easy to walk or move from room to room without running into furniture?
• Is there a nightlight for safety in moving around at night?

4. Communication

Quick, easy, and readily available ways to communicate with others are a must for you and your loved one or
friend, especially in an emergency. You may borrow or purchase:

• A cordless speaker phone with speed dial memory so that you can simply hit one button in an
emergency and get help without compromising the safety of your loved one or friend. Also, phones
with a large digital display for easy reading, and ring and voice enhancer, are helpful for people who
have hearing problems.
• A cellular phone, if you and your family member or friend travel or spend time outside the home.
• A medical or home alert system which will summon help with the push of a button, if you occasionally
leave your loved one or friend alone.
• An intercom or baby monitor so you may listen to your loved one or friend when you are in another
room.
• A bell that your loved one can ring to ask for help without yelling.

COMMUNITY RESOURCES

Following is a list of helpful services that may assist you with your caregiving responsibilities:

Home Care

Home care is medically supervised care in the person’s home by professional caregivers, who may help with
administration of drugs, assess the person’s condition, and provides baths and other personal services. Home
care services can include medical care, social support and help with chores or tasks of daily living. Home care
can help if there are ongoing care needs that family and friends cannot take care of alone.

Home Health Care

There must be a medical need to receive home health care. Home health care includes skilled nursing care, as
well as other skilled care services, like physical and occupational therapy, speech- language therapy, and
medical social services. These services are given by a variety of skilled health care professionals at home. The
goal of short-term home health care is to provide treatment for an illness or injury. Ask the doctor if your family
member or friend is eligible for these services.

Non Medical Home Care

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If your friend or loved one needs help with non-medical tasks or simply needs companionship you may want to
consider hiring a non-medical home care worker. These workers may help with household chores including
cooking, laundry, shopping, cleaning, bill paying and driving your loved one to appointments. One of the
benefits of this type of service is companionship with someone new who is focused on caring for and talking
with your loved one.

Senior Centers

Senior Centers offer older people a safe environment where they can take part in a range of activities led by
trained personnel. Meal and nutrition programs, information and assistance, health and wellness programs,
recreational and arts programs, transportation services, volunteer opportunities, educational opportunities,
employee assistance, intergenerational programs, social and community action opportunities and other special
services are often available through a senior center.

Adult Day Care Services

For older persons with serious limitations in their mobility, those who are frail, and those who have medical and
cognitive problems, adult day care centers can provide care in a safe, structured environment. Adult day care
services include personal and nursing care, congregate meals, therapeutic exercises, and social and recreational
activities. Most adult day care centers, like senior centers, are supported through public and non-profit
organizations.

Meal Programs

To find out about home-delivered meals programs and other meals programs, you can contact Meals on Wheels,
the National Eldercare Locator or the State or Area Agency on Aging. If these meals are not available, see if
your grocery store prepares food orders for pick-up or if it provides home-delivery service.

Hospice Care

This is a care at the end of life that emphasizes relief of symptoms and provides psychological and social
support for a dying person and family members. The setting may be the person’s home, a hospice facility, or a
hospital. To obtain hospice care, a person usually has to have a prognosis of less than 6 months.

Respite Care

This is a temporary care at home, in a nursing home, or in a hospice facility that enables the family members or
other caregivers to travel, rest, or attend to other matters. It may last days or weeks, depending on the care
delivery system and funding.

Nursing Home Care

This is a residential care in a licensed facility with nurses and support workers.

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Voluntary Organizations

They provide a variety of financial and support services to people who are ill and their families. Such
organizations usually focus on people who have a certain disease.

PROVIDING CARE

As a caregiver you may need to provide for all aspects of your family member or friend’s comfort.

Physical Care

Nursing management related to physical care at the end of life deals with symptom management and caring
rather than treatments for curing a particular disease or disorder. Meeting the patient’s physiologic and safety
needs is the priority. Physical care focuses on the needs for oxygen, nutrition, pain relief, mobility, elimination,
and skin care. People who are dying deserve and require the same physical care as people who are expected to
recover.

Pain

 Pain may be a major symptom associated with terminal illness and the one most feared.
 Pain can be acute or chronic.
 Physical and emotional irritations can aggravate pain.

 Assess pain thoroughly and regularly to determine the quality, intensity, location and contributing
factors.
 Minimize possible irritants such as skin irritations from wetness, heat or cold, and pressure.
 Administer medications around the clock in a timely manner, and on a regular basis to provide constant
relief rather than waiting until the pain is unbearable and then trying to relieve it.
 Provide complementary and alternative therapies such as guided imagery, massage, acupuncture, heat
and cold, therapeutic touch, distraction, and relaxation techniques as needed.
 Evaluate effectiveness of pain relief measures to a terminally ill patient.

Delirium

 A state characterized by confusion, disorientation, restlessness, clouding of consciousness, incoherence,

fear, anxiety, excitement, and often hallucinations.
 May be misidentified as depression, psychosis, anger, or anxiety.
 Use of opioids and/or corticosteroid in end-of-life-care may cause delirium.
 Underlying disease process may contribute to delirium.
 Generally considered a reversible process.

 Perform a thorough assessment for reversible causes of delirium, including pain, constipation and
urinary retention.
 Provide a room that is quiet, well lighted, and familiar to reduce the effects of delirium.
 Reorient the dying person to person, place, and time with each encounter.
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 Administer ordered benzodiazepines and sedatives as needed.

 Stay physically close to frightened patient. Reassure in a calm, soft voice with touch and slow strokes of
the skin.
 Provide family members with emotional support and encouragement in their efforts to cope with the
behaviors associated with delirium.
 Encourage the family to participate in the care for the client.

Restlessness

 May occur as death approaches and cerebral metabolism slows.

 Assess for spiritual distress as a cause for restlessness and agitation.

 Do not restrain.
 Use soothing music; slow, soft touch and voice.
 Limit the number of persons at the bedside.

Dysphagia

 May occur because of extreme weakness and changes in level of consciousness.

 Identify the least invasive alternative routes of administration for drugs needed for symptoms
management.
 Suction orally as needed.

Dehydration

 May occur during the last days of life.

 Hunger and thirst are rare in the last days of life.
 As the end of life approaches, patients tend to take in less food and fluid.

 Assess condition of mucous membranes frequently to prevent excessive dryness, which can lead to
discomfort.
 Maintain complete, regular oral care to provide for comfort and hydration of mucous membranes.
 Do not force the patient to eat or drink.
 Encourage consumption of ice chips and sips of fluids or use moist cloths to provide moisture to the
mouth.
 Use moist cloths and swabs for unconscious patients to avoid aspiration.
 Apply lubricant to the lips and oral mucous membranes as needed.
 Reassure family that cessation of food and fluid intake is a natural part of the process of dying.

Dyspnea

 Subjective symptom.
 Accompanied by fear of suffocation and anxiety.
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 Underlying disease process can exacerbate dyspnea.

 Coughing and expectorating secretions become difficult.

 Assess respiratory status.

 Elevate the head and/or position on side to improve chest expansion.
 Use a fan or air conditioner to facilitate movement of cool air.
 Administer supplemental oxygen as ordered.
 Administer drugs such as narcotics, sedatives, diuretics, antibiotics, corticosteroids, and bronchodilators
as ordered to relieve congestion and coughing and to decrease apprehension.
 Suction as needed to remove accumulation of mucus from the airways.

Weakness and Fatigue

 Expected at the end of life.

 Metabolic demands related to disease process contribute to weakness and fatigue.

 Assess the patient’s tolerance for activities.

 Time nursing interventions to conserve energy.
 Assist the patient to identify and complete valued or desired activities.
 Provide support as needed to maintain positions in bed or chair.
 Provide frequent rest periods.

Myoclonus

 Mild to severe jerking or twitching sometimes associated with high use of opioids.
 Patient may complain of involuntary twitching of upper and lower extremeties.

 Assess for initial onset, the duration, and any discomfort or distress experienced by the client.
 If myoclonus is distressing or becoming more severe, discuss possible drug therapy modifications with
the physician.
 Changes in opioid medication may alleviate or decrease myoclonus.

Skin Breakdown

 Skin integrity is difficult to maintain at the end of life.

 Immobility, urinary and bowel incontinence, dry skin, nutritional deficits, anemia, friction, and shearing
forces lead to a high risk for skin breakdown.
 Disease and other processes may impair skin integrity.
 As death approaches, circulation to the extremities decreases and they become cool, mottled, and
cyanotic.

 Assess the skin for signs of skin breakdown.

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 Implement protocols to prevent skin breakdown by controlling drainage and odor and keeping the skin
and any wound areas clean.
 Perform wound assessment as needed.
 Follow appropriate nursing management protocol for dressing wounds.
 Follow appropriate nursing management protocol for a patient who is immobile, but consider realistic
outcomes of skin integrity vs. maintenance of comfort.
 Follow appropriate nursing management to prevent skin irritations and breakdown from urinary and
bowel incontinence.
 Use blankets to cover for warmth; never apply heat.
 Prevent the effects of shearing forces.

Bowel Patterns

 Constipation can be caused by immobility, use of opioid medications, lack of fiber in the diet, and
dehydration.
 Diarrhea may occur as muscles relax or from a fecal impaction related to the use of opioids and
immobility.

 Assess the bowel function.

 Assess for and remove fecal impactions.
 Encourage movement and physical activities as tolerated.
 Encourage fiber in the diet if appropriate.
 Use suppositories, laxatives, or enemas if ordered.

Urinary Incontinence

 May result from disease progression or change in the LOC.

 As death becomes imminent, the perineal muscles relax.

 Assess urinary function.

 Use absorbent pads for urinary incontinence.
 Follow the appropriate nursing protocol for the consideration and use of indwelling or external catheters.
 Follow appropriate nursing management to prevent skin irritations and breakdowns from urinary
incontinence.

Anorexia, Nausea, and Vomiting

 May be caused by complications of disease process.

 Drugs contribute to nausea.
 Constipation, impaction, and bowel obstruction can cause anorexia, nausea, and vomiting.

 Assess the patient for complaints of nausea and vomiting.

 Assess possible contributing causes for nausea and vomiting.
 Have family members provide the patient’s favorite foods.
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 Discuss modifications to the drug regimen with the health care provider.
 Provide antiemetics before meals if ordered.
 Offer and provide frequent meals with small portions of favorite foods.
 Offer culturally appropriate foods.
 Provide frequent mouth care, especially after vomiting.

Psychosocial Care

Anxiety and Depression

 Patients often exhibit signs of anxiety and depression during the EOL period. Anxiety is an uneasy
feeling caused by a source that is not easily identified. Anxiety is frequently related to fear. Causes of
anxiety and depression may include pain that is out of control, psychosocial factors related to the disease
process or impending death, altered physiologic states, and drugs used in high doses.

 Encouragement, support, and education decrease some of the anxiety.

 Management of anxiety may include both pharmacologic and nonpharmacologic interventions.

Fears

Fear is a typical feeling associated with dying. The nurse frequently assists the dying person to cope with fears.
Three specific fears associated with dying are fear of pain, fear of loneliness and abandonment, and fear of
meaninglessness.

Fear of pain

 There is a tendency to associate death with pain. Physiologically, there is no absolute indication that
death is always painful. Psychologically, pain may occur based on the anxieties and separations related
to the dying.

 Terminally ill patients who do experience physical pain should have pain-relieving drugs available.

Fear of loneliness and abandonment

 Most terminally ill and dying people do not want to be alone and fear loneliness. Many dying patients
are afraid that loved ones who are unable to cope with the patient’s imminent death will abandon them.
Dying patients typically want someone whom they know and trust to stay with them. It may be a loved
one or caregiver.

 The simple presence of someone provides support and comfort.

 Holding hands, touching, and listening are considered high-quality nursing responses.

Fear of meaninglessness

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 Fear of meaninglessness leads most people to review their lives. They review their intentions during life,
examining actions and expressing regrets about what might have been.

 Life review helps patients recognize the value that their lives have held.

Communication

Therapeutic communication is an important nursing intervention used to assist the dying patient and family.
Empathy and active listening are essential communication components in EOL care. Empathy is the
identification with and understanding of another situation, feelings, and motives. Listening is an active process
required in the development of empathy toward another’s feelings. Listening is essential. There may be silence.
Frequently silence is related to the overwhelming feelings experienced at the end of life. Silence can also allow
time to gather thoughts. Listening to the silence sends a message of acceptance and comfort.

Grief

Resolution of grief is the primary focus for anticipatory and dysfunctional grieving. Goals for grief resolution
include patient expression of feelings related to grief, acknowledgement of the impending loss, and
demonstrations of behaviors that reflect progress in grief resolution.

Priority interventions for grief must focus on providing an environment that allows the patient to express
feelings. The patient should be free to express feelings of anger, fear, or guilt without judgment on the part of
the nurse. The patient and the family need to know that the grief reaction is normal. Respect for the patient’s
privacy and need or desire to talk (or not to talk) is important. Honesty in answering questions and giving
information is essential.

As death approaches, the nurse should encourage the family to respond appropriately to the psychosocial
manifestations at the end of life.

Withdrawal

 Patient near death may seem to be withdrawn from the physical environment, maintaining the ability to
hear while not be able to respond.

 Converse as if the patient is alert, using a soft voice and gentle touch.

Unusual Communication

 Patient may become restless and agitated or perform repetitive tasks. Unusual communication may
indicate that an unresolved issue is preventing the dying person from letting go.

 Encourage the family to tell the dying person, “It’s okay to go. I will be fine.”

Vision-like Experiences

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 Patient may talk to persons who are not there or see places and objects not visible. Vision-like
characteristics assist the dying person in coming to terms with meaning in life and transition from it.

 Affirm the dying person’s experience as a part of transition from this life.

Saying Goodbyes

 It is important for the patient and family members to acknowledge their sadness, mutually forgiving one
another, and say goodbye.

 Encourage the dying person and family members to verbalize their feelings of sadness, loss, forgiveness;
to touch, hug, and cry.
 Allow the patient and family privacy to express their feelings and comfort one another.

Emotional and Spiritual Care

As a caregiver you may need to provide for all aspects of your loved one or friend’s comfort. In addition to
ensuring your loved one’s physical comfort, you can also provide emotional and spiritual comfort.

Your loved one or friend may experience emotional and spiritual pain. They are experiencing many losses
including the loss of control over their own life. It is important for you to continue to explain what is happening
with your loved one or friend's care, condition, and any other changes. Talk with a social worker, clergy, or
spiritual caregiver to help you find resources for additional emotional and spiritual support.

Take some time each day to talk to your loved one or friend about their feelings. Be patient and listen to what
they want to share with you. Whatever feelings they have - let them know that they have a right to feel that way;
do not try and talk them out of their feelings. Your loved one or friend may wish to discuss their fears or
concerns with someone else - encourage them to do so. Offer to contact a friend, counselor or chaplain, and give
them privacy when they discuss these issues with another.

V. QUALITY OF LIFE
SIGNS AND SYMPTOMS OF APPROACHING DEATH

Depending on the type of terminal illness and the metabolic condition of the patient, different signs and
symptoms arise. An experienced physician or hospice nurse can often explain these signs and symptoms to you.
If you have questions about changes in your loved one's condition, ask your hospice nurse for an explanation
that is one of the reasons she is serving you.

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There are two phases which arise prior to the actual time of death: the "pre-active phase of dying," and
the "active phase of dying." On average, the preactive phase of dying may last approximately two weeks,
while on average, the active phase of dying lasts about three days.

We say "on average" because there are often exceptions to the rule. Some patients have exhibited signs of the
preactive phase of dying for a month or longer, while some patients exhibit signs of the active phase of dying
for two weeks. Many hospice staff have been fooled into thinking that death was about to occur, when the
patient had unusually low blood pressure or longer periods of pausing in the breathing rhythm. However, some
patients with these symptoms can suddenly recover and live a week, a month or even longer. Low blood
pressure alone or long periods of pausing in the breathing (apnea) are not reliable indicators of imminent death
in all cases. God alone knows for sure when death will occur.

Signs of the preactive phase of dying:

• increased restlessness, confusion, agitation, inability to stay content in one position and insisting on
changing positions frequently (exhausting family and caregivers)
• withdrawal from active participation in social activities
• increased periods of sleep, lethargy
• decreased intake of food and liquids
• beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
• patient reports seeing persons who had already died
• patient states that he or she is dying
• patient requests family visit to settle "unfinished business" and tie up "loose ends"
• inability to heal or recover from wounds or infections
• increased swelling (edema) of either the extremities or the entire body

Signs of the Active Phase of Dying

• inability to arouse patient at all (coma) or, ability to only arouse patient with great effort but patient
quickly returns to severely unresponsive state (semi-coma)
• severe agitation in patient, hallucinations, acting "crazy" and not in patient's normal manner or
personality
• much longer periods of pausing in the breathing (apnea)
• dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or
cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or
shallow progressing to very deep breathing while also changing rate of breathing to very fast and then
slow)
• other very abnormal breathing patterns
• severely increased respiratory congestion or fluid buildup in lungs
• inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
• patient states that he or she is going to die
• patient breathing through wide open mouth continuously and no longer can speak even if awake
• urinary or bowel incontinence in a patient who was not incontinent before
• marked decrease in urine output and darkening color of urine or very abnormal colors (such as red or
brown)
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• blood pressure dropping dramatically from patient's normal blood pressure range (more than a 20 or 30
point drop)
• systolic blood pressure below 70, diastolic blood pressure below 50
• patient's extremities (such as hands, arms, feet and legs) feel very cold to touch
• patient complains that his or her legs/feet are numb and cannot be felt at all
• cyanosis, or a bluish or purple coloring to the patients arms and legs, especially the feet and hands)
• patient's body is held in rigid unchanging position
• jaw drop; the patient's jaw is no longer held straight and may drop to the side their head is lying towards

Although all patients do not show all of these signs, many of these signs will be seen in some patients. The
reason for the tradition of "keeping a vigil" when someone is dying is that we really don't know exactly when
death will occur until it is obviously happening. If you wish to "be there" with your loved one when death
occurs, keeping a vigil at the bedside is part of the process.

Always remember that your loved one can often hear you even up till the very end, even though he or she
cannot respond by speaking. Your loving presence at the bedside can be a great expression of your love for your
loved one and help him to feel calmer and more at peace at the time of death.

Food & Metabolism

When appetite declines and your loved one is refusing food, it's quite difficult to accept. We all know that you
have to eat to live, but what many of us don't know is that if your body can't process the food because of a
terminal illness, forcing nutrition in will not prolong life. There is a natural process in the dying: decreased
appetite, decreased thirst, gradual withdrawal from the concerns of this world and focus on concerns about
death and taking care of "unfinished business" with family.

When the body's metabolism begins to shut down in the dying process, it no longer builds the body's tissues and
organs; this is what's called an "anabolic" state of metabolism. When the body's tissues and organs begin to
break down, whether or not nutrition is taken in, it's called a "catabolic" state of metabolism. In the catabolic
state, food is not absorbed, tissues no longer heal well, infection is difficult to cure and an irreversible
downward spiral is set into motion. Whether a patient eats food, is fed a liquid diet through a feeding tube, or
gets intravenous nutrition ("total parenteral nutrition" or "TPN"), the nutrients taken in will not stop this
catabolic process.

Constipation, Comfort & Lack of Appetite

Knowing when the catabolic state is reached is sometimes difficult to assess and is really a question for the
Attending Physician. However, there can be some very important things to be done which can improve appetite
in those who have not reached the catabolic state. In the terminally ill, and especially with those who are taking
several medications (especially opioid narcotics for pain), constipation can become a serious and even life-
threatening concern.

Constipation is a very common side-effect of narcotic pain medications such as morphine. That's why laxatives
are commonly ordered at the same time a narcotic medication is started for pain. Constipation if left untreated
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can become a total blockage of the digestive tract or an "impaction." The minor discomfort known as
constipation becomes a severe problem with possible extreme pain, gas, bloating, total lack of appetite, nausea
and vomiting.

A complicating factor in determining the cause of the lack of appetite and abdominal pain may be the patient's
reluctance to even discuss his or her bowel problems. It can be quite upsetting or embarrassing for some
patients to admit to these types of problems. Bowel function is one of the "private" areas of our life which
nobody relishes discussing. Some patients feel humiliated by their need to discuss or deal with these problems.
Sensitivity on the part of the family and hospice staff can go a long way toward easing the patient's problem.

Actually knowing how often the patient's bowels are moving and their nature is really important for patient
comfort. This is one reason nurses pay a lot of attention to this area. It's not a question of prying into private
matters. It's essential information needed by the nurse to accurately assess the patient and act accordingly. The
nurse needs to know if the bowels are moving regularly every day, couple of days or longer? Are they soft or
hard? Painful to pass? Is there much straining? What color are they? Does the patient have abdominal pain, gas
or bloating? The answers to all of these questions and others tell the nurse and physician much and can help
them help you deal with these problems. Many patients hide their problems with their bowels and will not
readily discuss these areas. One may be thinking that the patient's lack of appetite signals the "end" when the
patient may simply be severely constipated.

So before anyone concludes that a "catabolic" state of metabolism has set in, one has to make sure that there is
no constipation or impaction involved. To prevent such complications, hospice standing orders include
progressively stronger laxatives and "bowel programs" such as phosphate enemas and if necessary, mineral oil
enemas. Hospice nurses are experts at resolving these sorts of problems which can be severely uncomfortable
for their patients.

Simply taking a stool softener such as Colace (docusate) is not enough for those patients taking opioid pain
medications. Stronger laxatives such as PeriColace (docusate + casanthranol) or Senokot (from Senna) are used
in increasing dosages as necessary to keep the bowels moving. If the patient has not been able to prevent
constipation from becoming serious, the nurse administers enemas, perhaps more than one day in a row, in
order to clear out the blockage. Many nurses find that mineral oil is extremely effective in softening hardened
stool in the large intestine and rectum. Because the large intestine cannot reabsorb the oil like it does with water
in the bowels, the stool remains softened and can be removed with a simple flushing enema of warm water or
phosphate. Patience is necessary, and sometimes, applying an oil enema and then waiting till the next day will
allow for easy removal. A patient who has an impaction may find an abrupt approach much too painful for
quick removal of hardened stool. The hospice nurse must work with and respect the patient's ability to tolerate
the procedure.

It is quite common to find that a patient who had been severely constipated or impacted may regain their
appetite, energy level, become more responsive and eat or drink much more than earlier. Adequate medication
for bowel management is essential to patient comfort.

Artificial Methods of Feeding, Tube Feedings and IV Nutrition

Artificial methods of feeding a patient are some of the most controversial interventions available, along with
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other forms of prolonging or supporting life that would not continue without doing something to assist the
patient. Patients who lose consciousness and slip into a coma cannot eat on their own; patients who have severe
strokes with consequent injury to their brain function often cannot eat on their own and may have serious
swallowing difficulties which make oral feeding "contraindicated"...the food, if given, may be taken down into
their lungs and "aspirated." Anyone who cannot consciously swallow and also "protect their airway" (by
making sure the food goes down into their stomach) is at risk for aspirating food into their lungs, causing a type
of pneumonia called "aspiration pneumonia." For the terminally ill, adding a case of "aspiration pneumonia" to
their difficulties may be the final stroke that takes them from us.

To avoid aspiration pneumonia, some patients or families, with their loved one's permission (hopefully) may
request the doctor to place a feeding tube of one sort or another. Liquid nutritional formulas are given through
these tubes and the patient is often not allowed to take any food or liquid by mouth/orally, in order to avoid
aspirating the food or liquid into the lungs. Tubes that go into the stomach are "gastrostomy tubes" or "G-
tubes." Tubes that are placed down the nose into the stomach are called "Nasogastric tubes" or "NG tubes."
Tubes that are placed down the nose into the small intestine are called "NJ tubes," because they pass from the
nose down into the jejunum, a section of the small intestine.

When the patient has a disease of one or more of the digestive organs which makes it impossible for the patient
to digest food, the surgeon may place a central intravenous line ("IV") for the purpose of giving nutrition
directly into the blood vessels. A patient who gets all of his or her nutrition through such a central line is getting
"total parenteral nutrition" or "TPN" for short.

Placement of feeding tubes into the stomach or small intestine is common in patients who have had a stroke
which interferes with swallowing, but who otherwise do not have a terminal illness. They are perceived to have
a chance to maintain an acceptable "quality of life" which "justifies" the placement of the artificial feeding tube.
In those cases where the patient does have a terminal illness, the patient or family must "wrestle" with the
decision of whether or not to place a feeding tube to get nutrition into the patient when the patient can't swallow
on his or her own. Placing a feeding tube into the actively dying patient would normally be considered
inappropriate, because the patient cannot absorb the nutrients. A physician would most likely state that he or
she could not "justify" placing a feeding tube in that situation.

If the patient has a terminal illness and needs a feeding tube, but would live for a "reasonable" length of time
and have a decent quality of life, surgeons will usually agree to place a feeding tube. What constitutes a
"reasonable" length of time or what constitutes an "acceptable" quality of life are questions which medical
ethicists struggle to answer and which families and patients must answer every day. Many surgeons would
refuse to place a feeding tube into the actively dying. Putting the patient through the trouble of the procedure
would not bring results which would improve the patient's longevity or quality of life. Some health
professionals might consider the placement of a feeding tube at such a time, a form of cruelty.

However you may think about it, some family members argue bitterly over such decisions. That's one important
reason for patients to fill out "Advanced Directives" for Medical Care forms in which they clearly delineate
their wishes for health care, should they become unable to communicate their wishes on their own. Some family
members are unable to "let go" and ask for every possible medical intervention which may prolong the patient's
life. Some health professionals may question whether the interventions are being performed for the welfare of
the patient or to somehow make the family members feel better, less guilty, or comfortable. Medical social
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workers are experienced in assisting families work through these types of decisions and should be utilized when
family conflicts may interfere with the welfare or wishes of the patient.

Questions which need to be answered are: Is the patient able to "enjoy" the quality of life he or she has? Does
the patient wish to prolong his or her life, or is he or she ready to let go and pass on? Is the patient conscious or
does the patient have a possibility of regaining consciousness so that later, he or she may have an "acceptable"
quality of life? Will the procedure increase or decrease the patient's suffering? Or would it prolong the patient's
suffering? What are the patient's own wishes regarding these types of medical interventions?

Hospices do not usually institute measures which artificially prolong life; rather, the hospice approach is to
promote patient comfort and quality of life, which may indirectly prolong life, but which certainly increase the
patient's "enjoyment" of any remaining time left. Although hospice is aimed at relieving symptoms and
promoting patient comfort, a hospice patient always has the legal right to pursue any medical intervention he or
she wishes.

Whether or not the insurance, Medicare or Medicaid will pay for such interventions is an important factor to
take into consideration and explore. Whether or not a physician will agree to such procedures is another
question. If you have these types of questions, it is important to speak with the hospice medical social worker
who can provide answers to these questions and thereby assist you in making an informed decision on your
own. In some cases, the insurance, Medicare, or Medicaid will pay for certain procedures if the physician can
"justify" the procedure from a medical point of view, that it is "reasonable and necessary" for the patient's
welfare.

If it is found that the "hospice benefit" will not pay for certain procedures, it may be possible for the patient to
"revoke" the hospice "benefit" in order to temporarily qualify for the regular medical coverage under Medicare
or other insurance. After a procedure is done, the patient can then return to the hospice benefit by re-"electing"
the hospice benefit. Although this may sound confusing or complicated, it is the hospice social worker who can
help to make the necessary arrangements for the patient's welfare and you should discuss your concerns with
your medical social worker.

Meals
As people age, their taste buds diminish so their appetite and desire for food changes. Also, they can experience
problems with chewing and swallowing. If this is a problem, please contact your doctor and ask for a nutritional
consultation to help you and the person you are caring for.
In the last weeks of life as the body naturally shuts down, your loved one will need and want less food. Offer
small amounts of the food they enjoy. Since chewing takes energy, they may prefer milkshakes, ice cream or
pudding.

Clothing
Regardless of our age or physical condition, we want to look and feel our best. Today’s clothing options make
that a much easier goal to reach. When buying clothing, consider the following:

• Slacks and skirts that have elasticized waistbands or tie waistbands are easier to get on and off and are
more comfortable.
• Clothing with snaps, zippers and/or buttons down the front are easier to manipulate.
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• Shoes that will not slip off easily, and have a non-skid tread.
• Interchangeable and color coordinated clothing. For example, slacks and tops that be worn with several
others.
• Clothing that is washable and wrinkle-free saves on dry cleaning bills and ironing time.

Exercise
In consultation with your loved one’s or friend's physician and physical therapist, you can plan a routine of
exercises.

Exercise, even for bed and wheelchair-bound persons, helps to improve:

• Circulation (blood flow)

• Lung and heart function
• Posture
• Mental alertness

VI. Caring for the Caregivers

Adjusting to the New Role

As you may have experienced, caring for a loved one or friend is not easy, nor is it something most of us are
prepared to do. Like most people, you have probably had questions about your loved one or friend’s illness or
condition, and have spent time finding answers to those questions.

Now that you have learned about the basics of caregiving, and better understand how to provide care, there may
still be times when you feel overwhelmed or unable to care for your loved one’s or friend’s needs.

This section will give you information and practical tips for managing the responsibilities of being a caregiver
by taking care of your own needs. Though they may seem selfish, they are not! Caregivers need to take care of
themselves to remain healthy both physically and mentally.

Warning Signs of Caregiver Stress

Caregiver stress is the emotional and physical strain of caregiving. It can take many forms. For instance, you
may feel:

• frustrated and angry taking care of someone with dementia who often wanders away or
becomes easily upset
• guilty because you think that you should be able to provide better care, despite all the
other things that you have to do
• lonely because all the time you spend caregiving has hurt your social life
• exhausted when you go to bed at night

Caregiver stress appears to affect women more than men. About 75 percent of caregivers who report feeling
very strained emotionally, physically, or financially are women.

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Although caregiving can be challenging, it is important to note that it can also have its rewards. It can give you
a feeling of giving back to a loved one. It can also make you feel needed and can lead to a stronger relationship
with the person receiving care. About half of caregivers report that:

• they appreciate life more as a result of their caregiving experience

• caregiving has made them feel good about themselves

The home health care nurse needs to recognize signs of caregiver role strain and suggest ways to
minimize or alleviate this problem. Signs of caregiver overload include the following:

 Difficulty performing routine tasks for the client

 Reports of declining physical energy and insufficient time for caregiving.
 Concern that caregiving responsibilities interfere with other roles such as those of parent, spouse, work,
or friend.
 Anxiety about ability to meet future care needs of client
 Feelings of anger and depression
 Dramatic change in the home environment’s appearance.

Common Caregiving Problems

 Mental health concerns

- Depression
- Anxiety
- Witnessing the suffering of relatives
 Health concerns
- Fatigue
- Sleep problems
- Risk of illness, injury, mortality
 Secondary strains
- Work – employment
- Financial strains
- Relationship stress
- Loss of time for self-care
- Reduced quality of life
 Care decisions
- “When is it time” for various services?
- Residential placement
- End of life care planning
 Resources and eligibility for services
- Housing
- Healthcare
- Community services
- Respite

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 Family challenges
- Conflict about care
- Lack of support for caregiver
- Balancing needs of healthy and sick family members
- Behavioral issues
- Interpersonal conflicts

Stress Management for Caregivers

Caregivers can utilize certain stress management techniques in their lives immediately, because they do not
require much time or effort. This should help them feel better, cope easier, and stay healthier.

Breathing to Reduce Caregiver Strain

Caregivers under stress tend to breathe in a rapid, shallow way. In turn, breathing this way causes other
uncomfortable symptoms.

Practicing this deep breathing exercise 2 to 5 times per day can help caregivers calm down when they feel
overwhelmed with anxiety. Regular practice can also help lessen stress over time. It takes only a few minutes
and can be done anyplace, anytime.

Muscle Relaxation to Reduce Caregiver Stress

Caregivers under stress tend to habitually tense their muscles. This can cause fatigue, aches and pains, and make
sleeping difficult. Progressive muscle relaxation can be learned by practicing. There are multitudes of
progressive muscle relaxation CDs available. Caregivers who are too busy to practice several times during each
day can practice while lying in bed at night, at which time it should help them sleep. By practicing over time,
even the most stressed out caregivers can gain the ability to relax the muscles immediately upon command.

Caregivers Require Sleep to Properly Manage Stress

Difficulty sleeping or too much sleeping can be a sign of caregiver burnout which may require professional
help. However, sleep deprivation is a technique of torture because the effect lack of sleep has on the body and
mind can actually be dangerous. Chronic lack of sleep due to the patient waking in the night may seem
impossible to solve, but it is absolutely necessary for the caregiver's health to find a way to solve it.

Asking a friend, family member or paid helper to take the night shift one or two nights each week should be
considered. Sleeping during the day when the patient sleeps is another possibility. Some communities offer free
respite care and will sit with the patient while the caregiver goes out or sleeps. Once breathing and muscle
relaxation are mastered, sleep will come.

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A Healthy Diet for Stress Reduction

A diet filled with caffeine, sugar and fat can contribute to stress and its negative effects. Caregivers make an
effort to feed their patients properly. Taking five or ten extra minutes to prepare healthy food for themselves
while they are in the kitchen can help. Caregivers can package the food to be eaten later. When friends offer
help, stressed out caregivers can ask them to cook a nice healthy meal.

Exercise Can Help Caregivers Reduce Stress

Yoga is excellent exercise which teaches muscle relaxation. In addition, aerobic exercise such as walking
reduces stress, lifts mood, and promotes good health. It’s sometimes difficult for caregivers to carve out time to
do this, but once they do it they usually feel so much better that this motivates them to continue. Caregivers
should be open to the possibility that there is a way to fit it in.

Venting

Caregiving causes a multitude of emotions. It can cause a person to feel two opposite emotions at the same time
which is difficult to deal with. Suppressing emotions can lead to stress, anger and illness. Caregivers may find
that sharing their feelings with family members is frustrating, and they may feel misunderstood and judged.

Caregiver support groups are the perfect place to get these emotions out. Many communities offer free support
groups and counseling for caregivers. Contact a local office of the aging or senior services center to find a
support group.

Acknowledging You Need Assistance

As caregivers, we sometimes become so involved in the day-to-day efforts to keep things going we may forget
to let others know we need additional assistance with providing care, or just need a break from the work of
caring for someone.

Some ways to make your needs known include:

• Work Options. If you are a working caregiver, it is important to discuss your needs with your employer.
Telecommuting, flextime, job sharing or rearranging your schedule can help to minimize stress.
Increasingly, companies are offering resource materials, counseling, and training programs to help
caregivers.
• Involve Older Children. Older children living at home may be able to assist you and/or your loved one.
Such responsibility can help young people become more empathic, responsible, and self-confident and
give you needed support.
• Ask Others to Help. You can and should ask other family members to share in caregiving. A family
conference can help sort out everyone’s tasks and schedules. Friends and neighbors also may be willing
to provide transportation, respite care, and help with shopping, household chores or repairs.
• Create a list of things that need to be done, such as grocery shopping, laundry, errands, lawn care,
housecleaning, or spending time with your loved one or friend, and put it on the refrigerator or near the
front door. If someone says, “let me know if there is anything I can do to help” you can point to the list.

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• Take a break from caregiving. Even if it is only 15 or 20 minutes a day, make sure you do something
just for you.
• Exercise. Whether it is a 20 minute walk outside or taking a yoga class, exercising is a great way to take
a break, decease stress and enhance your energy.
• Eat healthy. Your health and nutrition is just as important as your loved one's, so take the time to eat
well. If you are having difficulty doing that, ask for help and get others to fix meals for you.
• Subscribe to caregiving newsletters or list serves for support.
• Attend a support group for caregivers. Check with your doctor, hospice or local Area Agency on Aging
for groups that meet for this purpose. See also Family Caregiver 101 for more about caregiver support
groups.
• Seek professional help. Many caregivers have times when they feel lonely, anxious, guilty, angry,
scared, frustrated, confused, lost and tired. If you feel like these feelings are overwhelming you, call
your doctor, hospice or another community resource for help.

Respite-Taking a Break

Respite provides caregivers a break from their daily responsibilities. Respite can cover a wide range of services
based upon the unique needs of the caregiver.

Respite might mean:

• Medical or social adult day care for the loved one or friend
• A short-term stay in a nursing home or assisted living facility for the loved one or friend
• A home health aide or home health companion
• A private duty nurse

Respite for the caregiver might be:

• Giving the caregiver a short break for a doctor’s appointment or to go shopping

• Allowing the caregiver the opportunity to nap, bathe, or otherwise rejuvenate
• A break to attend a church service or see a movie
• Taking a much needed vacation
• Pampering oneself with a hair appointment or manicure
• Scheduling elective surgery
• Simply visiting friends or other family members

However you choose to take a break, make sure you do it often enough to maintain a healthy balance between
caregiving and your personal needs.

“DIGESTUM, ERGO LEARNUM”

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