Professional Documents
Culture Documents
Hospice Palliative Care
Hospice Palliative Care
adults caring for other relatives, such as grandparents, siblings, aunts, and uncles
spouses caring for elderly husbands or wives
Izzy Way
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).
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:
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.
Izzy Way
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;
Wheelchair?
Bedside commode?
Lift?
Oxygen?
3. Mobility
Is it easy to walk or move from room to room without running into furniture?
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.
bell
that
your
loved
one
can
ring
to
ask
for
help
without
yelling.
Izzy Way
Izzy Way
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.
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 friends 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 patients 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.
Izzy Way
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.
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
Izzy Way
Identify the least invasive alternative routes of administration for drugs needed for symptoms
management.
Suction orally as needed.
Dehydration
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.
Izzy Way
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
Izzy Way
As death approaches, circulation to the extremities decreases and they become cool, mottled, and
cyanotic.
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.
Izzy Way
Constipation, impaction, and bowel obstruction can cause anorexia, nausea, and vomiting.
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.
Izzy Way
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 patients 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.
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 anothers 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 patients
privacy and need or desire to talk (or not to talk) is important. Honesty in answering questions and giving
information is essential.
11
Izzy Way
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, Its okay to go. I will be fine.
Vision-like Experiences
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 persons 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 friends comfort. In addition to
ensuring your loved ones 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
12
Izzy Way
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.
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.
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
beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
13
Izzy Way
patient requests family visit to settle "unfinished business" and tie up "loose ends"
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
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)
inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
patient breathing through wide open mouth continuously and no longer can speak even if awake
marked decrease in urine output and darkening color of urine or very abnormal colors (such as red or
brown)
blood pressure dropping dramatically from patient's normal blood pressure range (more than a 20 or 30
point drop)
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)
14
Izzy Way
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.
Izzy Way
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
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
16
Izzy Way
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 "Gtubes." 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
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
17
Izzy Way
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. Todays 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.
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.
18
Izzy Way
Clothing that is washable and wrinkle-free saves on dry cleaning bills and ironing time.
Exercise
In consultation with your loved ones 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:
Posture
Mental alertness
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
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.
19
Izzy Way
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:
Concern that caregiving responsibilities interfere with other roles such as those of parent, spouse, work,
or friend.
Izzy Way
Izzy Way
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 everyones tasks and schedules. Friends and neighbors also may be willing
to provide transportation, respite care, and help with shopping, household chores or repairs.
22
Izzy Way
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.
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.
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
Izzy Way
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.
24
Izzy Way