"In June, Mother's doctor asked for a fam-
ily decision about stomach tube feeding.
Dysphasia, along with the dementia, was
sabotaging her ability to swallow enough
nourishment to sustain life.
When I
talked to Mother about the doctor's
request, I was grateful that she had the
clarity to let me know her choice. She
shook her head in disapproval. "
- Carol Ann Young, Author
- Adapted from Always on Call, Edited by Carol Levine
I N F O R M E D C O N S E N T
Depending upon your loved one's diagnosis, there may be
a number of different treatment options available, and
each option may have both advantages and disadvan-
tages. The patient has the right to make informed
decisions about his/her medical care. This is what is
referred to as "Informed Consent." In order to make
an informed decision you and the patient should know:
s Specific information about the patient's diagnosis and
recommended treatment.
s The goals of treatment (e.g. cure, symptom relief).
s The risks and benefits of treatment.
s What to expect after treatment (e.g. side effects, recov-
ery time).
s What to expect if treatment is refused.
s The costs for each treatment option, including what is
and is not covered by insurance.
s If there are any alternatives to the recommended treat-
ment.
The doctor should thoroughly discuss each of these topics
with you and the patient and allow both of you to ask
questions and voice any concerns. You and the patient
should be sure that you understand all of the information
before agreeing to or refusing treatment.
43
A D V A N C E D I R E C T I V E S
The person who is appointed may be referred to as the
patient's health care agent, surrogate, attorney-in-fact, or
proxy. This individual can be a friend, family member, or
partner. It should be someone who is familiar with the
patient's views about medical care, including the role of
life-sustaining treatments like mechanical respiration, and
will uphold his or her wishes as medical situations arise.
Advance directives are statements made by
the patient that describe the treatments
In order to designate a health care agent, a form must be
that should or should not be given in the
filled out, which becomes a legally binding document.
event a medical situation arises which
This form must be signed by the patient, health care
requires a decision about therapy, and the
agent, and a witness. After the proxy form is signed,
patient is unable to speak for him or
hospitals, other health care facilities, and all health care
herself. For those living with serious, progres-
professionals are legally obligated to follow medical
sive illnesses, the future is unpredictable and
instructions given by the health care agent, if the patient
these patients should decide on treatments
is unable to communicate. In the event that the patient's
while they are mentally capable of doing so.
first choice is unable to uphold the patient's medical
Patients can be sure that their wishes are fol-
wishes, an alternate agent may also be chosen. Agents
lowed by executing advance directives with the
can be changed at any time if the individual decides that
help of a lawyer. While laws vary in each state,
someone else would be better able to represent him or
most recognize at least one of two advance
her.
directives:
Health Care Proxy forms can be obtained from the
s Health Care Proxy
hospital or by contacting:
s A Living Will
Choice in Dying/Partnership for Caring
Health Care Proxy
1035 30th Street, NW
Washington, D.C. 20007
A Health Care Proxy, also referred to as a
(800) 989-WILL (9455)
"Medical/Durable Power of Attorney for Health
www.choices.org
Care," is a legal form that authorizes a person
www.partnershipforcaring.org
of the patient's choice to make health care
decisions for the patient if he/she is unable to
do so.
44
Living Will
A Living Will is a set of written instructions that outline
the patient's health care wishes at the end of life. If the
patient completes a Health Care Proxy form, but also has
a Living Will, the Living Will provides the instructions for
the proxy. It is important for everyone to have a copy of
the patient's Health Care Proxy, including his/her doctors
and hospital, and that it is in the patient's chart.
Advantages of Advance Directives:
v Help patients express their future wishes about medical
treatment.
v Ensure that patients will not be given medical treat-
ments they do not want.
v Take pressure off family members if decisions must be
made about medical care and patients are unable to
communicate.
v Patients can choose a person they feel will best repre-
sent their wishes and can make serious decisions about
their health care.
v Patients can change living wills or health care proxies
at any time.
45
O P T I O N S F O R C A R E F O R P R O G R E S S I V E I L L N E S S
At all stages of the disease, effective palliative care
increases the likelihood that the patient will cope ade-
quately with the rigors of therapy and maintain a satisfy-
ing level of physical and psychosocial functioning.
End-of-Life Care
Palliative Care
Once it becomes clear that your loved one is unlikely to
recover, you will be faced with a variety of concerns, diffi-
Palliative care focuses on the physical, psy-
cult choices and decisions. Some of the biggest concerns
chosocial, and spiritual concerns of patients
for the patient revolve around fears related to suffering,
with life-threatening illnesses at any phase of
their disease. This offers patients many options
loss of dignity, and causing family members distress. It is
to ensure comfort and quality of life throughout
important to recognize that you and your loved one have
the duration of their illness. For patients with
options that can help make the end of life less stressful.
incurable diseases who are undergoing active,
Even though curing the disease may not be possible, doc-
life-prolonging therapies and have life
tors may recommend treatments that can control the dis-
expectancies that can extend to years, palliative
ease or its complications, such as:
care includes:
s Chemotherapy to continue to destroy cancer cells.
s Management of distressing symptoms, such
s Antibiotic therapy to help treat infections resulting
as pain and fatigue.
from an underlying condition.
s Restoration of function.
s Renal dialysis to take over function for the kidneys if
s Practical support for the patient and family.
they fail to work.
s Psychological interventions.
s Surgery to remove tumors or diseased organs.
s Concern for spiritual health.
s Clear discussions about the goals of care
When a patient's condition deteriorates, doctors may rec-
(with advance directives).
ommend treatments that are life-sustaining, such as:
For dying patients, palliative care includes com-
fort for the patient and preparation of both the
s Artificial ventilation to help the patient breathe.
patient and family for the inevitability of dying.
s Tube feeding and hydration to give the patient nutri-
This preparation may address a broad range of
ents that they are unable to take in by mouth.
psychological, social, family, and spiritual
s Cardiopulmonary resuscitation (CPR) to restore heart-
concerns.
beat and breathing if the patient stops doing so on his
or her own.
46
In making these important decisions you and your loved
one should become well-informed by speaking to the doc-
tor, considering your own personal values, examining
treatment alternatives, and understanding legal and ethi-
cal issues.
To help with this decision, consider these questions:
v What is the prognosis/outcome of your loved one's
illness?
For seriously ill patients, treatments can prolong
v How much of an impact would continued treatment
the dying process and lead to dependence on
have on your lives?
machines and tubes to live. Patients may expe-
v How much time would be gained from life-sustaining
rience more pain and discomfort and can
treatment?
remain unconscious for long periods of time
v What are your feelings about relying on machines and
with the use of such procedures and apparatus.
tubes to stay alive?
These factors can make it difficult to spend
v What is the level of discomfort the patient is willing to
quality time with the patient and can cause a
withstand to live longer?
great deal of suffering for both the patient and
v Would your loved one want to remain on life support
the family. Patients and caregivers should
even if he/she is not likely to regain consciousness?
understand that all of these interventions can
v How important is staying alive to the patient as
be refused. Patients can choose to have pallia-
opposed to being able to live independently?
tive/comfort care alone at any time. Many
v Are there any alternative treatment options?
patients also opt to have a do-not-resuscitate
(DNR) order, which tells health care providers
not to use CPR if the patient's heart and breath-
ing stop (see DNR Fact Sheet). These choices
can offer patients comfort, a more peaceful
death, time to spend with loved ones, freedom
from machines and tubes, and the possibility of
dying at home.
47
Hospice Care
Hospice care services
"I have been telling anyone who'd listen that hos-
Home Care Visits
pice nurses are angels. Hospice appeared in the life
of my wife and myself when we'd become desper-
Hospice care is provided by an interdisciplinary team of
ate as a result of her worsening cancer. Traditional
professionals consisting of nurses, physicians, social work-
medicine was no longer helping us. From the
ers, counselors, clergy, volunteers, home health aides, and
moment they walked through our door, the hos -
pice staff offered us compassion, professional skill,
special therapists. Team members make regular visits to
and 24-hour attention at every level from med-
the patient's home and work together to plan and coordi-
ical issues to volunteer services to equipment deliv-
ery. They brought to my wife, and all at her bed-
nate care, such as:
side, a kind of peace."
s Providing medical care.
- Husband of a hospice patient
s Instructing the family on how to manage the patient's
physical and emotional symptoms such as pain, anxiety,
What is hospice?
or confusion.
Hospice is generally not a specific place--it is a
s Assisting with the personal care of the patient such as
specialized program of care for patients with a
bathing and feeding.
limited life expectancy and for their family and
s Helping with household chores.
s
friends. With its comprehensive array of med-
Offering emotional support to the patient and family.
ical and social services, hospice strives to meet
Transportation
each patient's unique physical, emotional, social
Ambulance service to and from an inpatient admission is
and spiritual needs, as well as the special needs
provided as part of most hospice programs. Outpatient
of the patient's family and close friends. The
transportation is provided on an individual basis based on
goals of hospice are to help the patient have as
the medical necessity of ambulance/ambulette care and
good a quality of life as possible, and to assist
individual insurance carrier coverage.
caregivers in their efforts to keep their loved
Counseling
ones in the comfort of their own homes. This
Emotional support is offered for both the patient and fam-
includes keeping the patient as comfortable as
ily through such means as counseling, music, prayer, or
possible by relieving pain and other uncomfort-
companionship. Depending on the needs of the patient
able symptoms, preparing for a death that fol-
and family, there are many avenues for support:
lows the wishes and needs of the patient, and
s
reassuring both the patient and family members
Social workers with whom one can talk and sort
through personal issues.
by helping them understand and manage the
s Chaplains to offer spiritual counseling consistent with
patient's care. This support assists patients and
one's faith and beliefs.
families through the process of facing, under-
s Music therapists to address feelings and offer comfort
standing and preparing for death.
through music.
s Volunteers to lend an ear and provide companionship.
48
Inpatient Care
The Hospice Team and What They Do
Nurse
Short-term inpatient care is available for prob-
The hospice nurse will visit weekly or as necessary. The
lems that cannot be relieved or managed at
nurse will use this time to assess the patient's health sta-
tus, tend to any medical needs, determine needs for home
home. Hospital admissions related to the pri-
health aide services, and instruct and counsel the family
mary illness take place at a contracted hospice
on caring for the patient. The nurse will communicate
directly with the doctor about the patient's health status
bed in a hospital affiliated with the hospice pro-
and adjustments in medications, which may be necessary
gram. Under most insurance plans, patients
to maximize comfort.
may also be admitted for "respite care" for a
Physician
Visits with a hospice physician can be scheduled for
limited time period of up to 5 days. Respite
patient evaluation. Otherwise, the physician usually sees
care is offered so that the family can take a
the patient as an outpatient, or, as an inpatient during
hospital admissions.
break from the rigors of caring for their loved
one at home.
Social Worker
The social worker will visit the home for an initial assess-
ment to further understand how the illness is affecting the
Bereavement Counseling
patient and family. The social worker will offer emotional
Coping with the loss of a loved one is not an
support, counseling , and education about community
resources to the family. He/she will visit weekly or as
easy task. After a loved one dies, there is usual-
needed.
ly a period of mourning, which is referred to as
Home Health Aide
bereavement. The bereavement program serves
Under most insurance plans, hospice provides limited
to support caregivers/family members during
home health hours based on assessment of patient needs
and evaluation of available resources. Home health aides
this time in a manner that takes into account
are trained and certified to assist with personal care to
their individuality, personal styles, and particular
the patient in the home. The home health aide works
under the direction of the hospice nurse with a written
belief systems. Bereavement services are
plan of care. He/she will report any changes in the
offered for 12 months following the death of a
patient's condition directly to the Nursing Supervisor and
will keep records of the patient's care as instructed by the
loved one. Services may include:
nurse. Services provided by home health aides may
include:
s Short-term individual counseling
s Assistance with bathing, washing hair, shaving, mouth
care, dressing changes, toileting, and other personal
s Bereavement groups
care.
s Telephone follow-up
s Preparing and serving prescribed diet and, if necessary,
s
helping the patient with eating.
Educational and inspirational mailings
s Assistance with prescribed exercises.
s Referrals for services in the local community
s Performing household tasks essential to patient's well-
being, such as making and changing the bed, doing the
patient's laundry, tidying the patient's room and bath-
room, and grocery shopping.
s Escorting the patient to and from appointments, as
needed.
49
Chaplain
touching the patient's intact skin.
Chaplains are available for the patient and/or
s Keep hands away from your mouth and face while
family for counseling, prayer, and coordination
working with the patient.
with the family rabbi, priest, minister, or imam.
They will assist within the framework of the
s Disposable gowns should be worn when your clothing
beliefs and values of the patient and/or family.
is likely to be in contact with secretions and excretions.
Volunteers
Discard the gown after use in the regular trashcan.
Volunteers are able to help in many ways, such
s Use disposable needles and syringes and discard in a
as staying with the patient while the caregiver
sharps container. If unavailable, use a rigid, puncture-
goes out, helping with transportation, providing
companionship, assisting with personal care of
resistant container, such as a bleach bottle or coffee
the patient (e.g. massage), and many other
can.
areas in which the patient or family need help.
s Do not recap needles, and do not purposely bend or
Music Therapist
break by hand, since accidental needle puncture may
The music therapist may be available to work
occur.
with the patient and/or family to promote relax-
s Dispose of waste, such as soiled tissues, dressings,
ation, expression of feelings, and sharing of
memories with others through music.
bandages, and gloves in plastic bags that are closed
and secured tightly.
General guidelines for caring for a
s Wastes which cannot be flushed down the toilet should
hospice patient at home
be placed in two plastic bags and thrown directly into
While caring for a terminally ill patient at home,
regular trash pickups, not in a household trashcan. Be
it is important to use precautions to prevent
sure to use a plastic liner in the trashcan and a tight-
blood and other body secretions from coming
fitting lid to keep out animals.
into contact with any cuts or open areas on the
What to do as death approaches
skin. Hand washing before giving direct care
This particular phase of caregiving is likely one of the
protects the patient who is susceptible to infec-
most difficult life experiences that you will have. This is
tion. Hand washing after care will protect you,
an extremely emotional and overwhelming time. You may
the caregiver. The following precautions are
find it helpful to identify additional individuals you can
recommended by the Centers for Disease
call for support. It also helps to be informed about what
Control and should be observed:
to expect at the end of life so that you can be prepared
s Wash your hands thoroughly, especially prior
when the time comes. Although it is difficult to predict
to performing direct physical care and before
exactly when a terminally ill person will die, a combina-
eating.
tion of signs and symptoms can signal that the time is
s Use gloves to protect hands whenever there
getting close. Not all symptoms will appear at the same
will be excessive amounts of bodily fluid con-
time, and some may never appear. However, all of the fol-
tact or where breaks in the skin occur.
lowing symptoms are normal and expected at the time of
s Gloves are not necessary when handling
death. If you have any questions or concerns, do not hesi-
patient clothing and other articles or when
tate to call your hospice office.
50
s Hands, arms, feet, and legs may become cool to touch.
You may notice the underside of the body becoming
much darker in color. The skin may turn a bluish color
with purplish splotches. This is the result of blood cir-
culation slowing down.
What To Do:
v Use blankets for warmth to prevent the feeling of
being cold.
Signs and symptoms of
approaching death
v Do not use an electric blanket or heating pad.
s Decreases in the need for food and fluids
v Be aware that occasionally arms and legs may be cool
may occur. Your loved one will probably say
to touch, but the patient may state that he/she is hot
that he/she doesn't have an appetite and
and kick off the blankets.
isn't hungry. The body naturally begins to
conserve energy and requires less nourish-
ment. This is the body's natural response to
s Your loved one will gradually spend more time sleeping
the dying process. It is telling you that eat-
during the day and may be difficult to arouse at times.
ing and drinking are no longer helpful and
This is the result of a change in the body's metabolism.
that the body can no longer use food and
fluid properly.
What To Do:
v Plan time and activities with your family member for
What To Do:
those occasions when he/she seems most alert.
v Contact the hospice nurse so he/she can sug-
v Don't confuse withdrawal with rejection. Your loved
gest alternative ways to give medications.
one may not wish to carry on a conversation much of
v Offer fluids in small sips, but do not force.
the time, but may be comforted by your voice talking
v Allow your loved one to choose when and
or reading from a favorite book or verse.
what to eat or drink, even if this means little
v Soft quiet music may be comforting at this time.
or nothing will be eaten or drunk.
v Offer food and drink, but do not force.
v Nutritional supplements may be indicated in
some cases but, again, do not force.
v Discuss alternatives with the hospice nurse.
51
s There may be a change in bowel or bladder habits.
Loss of control of bowel and/or bladder may occur. If
there is a bladder catheter (Foley) in place, you will
notice the urine becoming dark, with the amount
decreasing as death comes closer.
What To Do:
v Ask the hospice nurse for pads to put on the bed to
s The patient may become increasingly con-
protect the linen.
fused about what time it is, where he/she is,
v Change pads as needed to keep the bed as clean and
and the identity of close and familiar people.
dry as possible.
The patient may also become restless, see
v Ask the hospice nurse to show you how to place pads
things that are not there, or pull at the bed
under the patient and other ways to keep the skin
linen. This is caused by decreases in oxygen
clean, warm, and dry.
circulation to the brain and changes in the
body's metabolism.
s Changes in breathing patterns may be noticed.
What To Do:
Irregular breathing may occur and there may be a
v Remind the patient of the day and time,
pause for 10-30 seconds where there is no breathing at
and who is there with him/her.
all. This is called apnea. You may also notice that
v Talk to the patient calmly and reassuringly.
there are oral secretions that will collect in the back of
v Sit next to the bed and hold the patient's
the throat and cause a noisy breathing called a "death
hand to provide comfort.
rattle." This happens when a person is too weak to
v React calmly and behave with confidence,
cough or swallow. This symptom is common and
so as not to startle the patient further.
indicative of a decrease in circulation and a building up
v Always talk as if the patient can hear you,
of waste products in the body.
even if he/she appears to be unconscious.
v When providing care, explain what you are
doing.
v Keep a light on in the room (soft lighting
without shadows) to decrease some of the
confusion.
52
What To Do:
What to do at the time of death
v Changing the patient's position may help the
s Call the Hospice. Be sure to keep all numbers for the
breathing, but don't become alarmed if it
hospice in an accessible location, so you can refer to
doesn't. A change in breathing pattern is
them quickly (list these numbers on the Emergency
normal and expected.
Information Sheet in Chapter 2).
v When oral secretions build up, elevating the
s DO NOT CALL 911 OR THE PARAMEDICS.
head off the bed with pillows or obtaining a
s If you are alone, call a friend or family member to be
hospital bed will make breathing easier.
with you.
v Use a cool mist humidifier in the room.
s Note the time that your loved one stopped breathing.
v Use a moist washcloth to relieve a dry
s Call the funeral home. They will send someone to the
mouth.
house to take the body directly to the funeral home.
v Chapstick or vaseline to the lips may provide
You may instruct the funeral home to contact the
comfort.
hospice.
v Try turning the patient on his/her side to
keep secretions from getting caught in the
Hospice services are provided by Medicaid, Medicare, and
many private insurers. If you are unsure if your loved one
throat.
qualifies for hospice, speak to his/her doctor. To deter-
v Call the nurse for further advice if the
mine if the patient's insurance covers hospice, you can
patient becomes distressed with these
call the insurance company directly. If insurance does not
cover hospice, ask the hospice staff about other sources
symptoms.
of financial assistance that may be available. To find out
more about hospice or to locate a hospice program in
your area, see Appendix F.
s Hearing and vision ability may decrease
slightly.
What To Do:
v Maintain a peaceful, quiet atmosphere.
v Keep soft lights on in the room when vision
decreases.
v Soft music may be comforting.
v Be calm and reassuring.
v Never assume that the patient cannot hear
you when talking to others in the room.
Hearing is the last of the five senses to be
lost.
53