PADMASHREE COLLEGE OF NURSING,

NAGARBHAVI, BANGALORE

SEMINAR

ON

END OF LIFE CARE

SUBMITTED TO SUBMITTED BY
Ms. SOBHA. G MS.
SHYNY.S.VIJAYAN
[ASSO.PROFF OF PCON] [1 ST YEAR
MSC NURSING, PCON]

SUBMITTED ON

END – OF – LIFE CARE

 INTRODUCTION

Death is the termination of the biological functions that define a living organism. It will
eventually afflict all living things. One of the most difficult realities that nurses’ face is
that, despite our very best efforts, some patients will die. Although we cannot change this
fact, we can have a significant and lasting effect on the way in which patients live until
they die. In the past three decades there has been a surge of interest in the care of dying,
with an emphasis on the settings in which death occurs, the technologies used to sustain
life, and the challenges of trying to improve end- of- life care. Sometimes, in spite of
treatment, a condition or illness will cause death. In those cases, patients can decide what
they do and do not want done. They can decide whether they want aggressive treatment
that might prolong life or whether they prefer to stop treatment, which could mean dying
sooner but more comfortably. They may want to plan their own funeral. Advance directives
can help make the patient's wishes clear to families and health care providers.

TERMINOLOGIES

1) PALLIATIVE : Something used to alleviate pain, anxiety

2) HOSPICE : A home for people who are ill, terminally ill.
3) ATTORNEY : A person appointed to act for another in business or legal
matters.
4) BEREAVEMENT : Deprive of relation by death.
5) PASTORAL : Relating to the teacher’s responsibility for the general well
being of pupil or student.
6) HASTENING : Cause to occur or be ready or be done sooner or hurry.
7) BENEVOLENT : Wishing to do good, actively helpful, charitable.
8) PROACTIVE : Creating or controlling a situation by taking the initiative.
9) FUTILITY : Useless, ineffectual, vain.

MEANING

Care at the end of life focuses on making patients comfortable. They still receive medicines
and treatments to control pain and other symptoms. Some patients choose to die at home.
Others enter a hospital or a hospice. Either way, services are available to help patients and
their families deal with issues surrounding death.

PRINCIPLES OR PRECEPTS
 Precepts or principles underlying a more comprehensive and human approach to care of
dying:
 Respecting patients’ goal, preference, and choices.
 Attending to the medical, emotional, social, and spiritual need of the dying
person.
 Using strengths of interdisciplinary resources.
 Acknowledging and addressing caregiver concerns.
 Support the person.

ASPECTS OF END- OF- LIFE CARE

The important aspects of End Of Life Care are:

Preparation Understand
Palliative Advance
Of End Of ing CPR
Care Directives
Life and
DNR

Caring For
Care During Terminally Hospice Care
Final Days Ill Child
1) PALLIATIVE CARE

Today, doctors are able to cure many people diagnosed with cancer. If a cure is not
possible, some people receive treatment to manage the symptoms and side effects of cancer
and its treatment. This type of treatment is called palliative care, and it helps people with
cancer at all stages of their illness live as comfortably as possible.

Purposes

The goals of palliative care include:

 Treating pain and all other physical symptoms caused by disease and its treatment

 Addressing a person's spiritual needs or concerns

 Addressing a person's practical needs, such as transportation and financial concerns.

 Treating a person's psychosocial (emotional and social) needs, such as coping with
changes in body image and depression

 Providing support for the patient's family, friends, and caregivers

Children can also receive palliative care. In these situations, parents usually work with the
health care team to help their children manage symptoms so they can feel as comfortable as
possible. Members of the family, including other children, receive counseling to help cope
with the situation.

Comparing the palliative care and hospice care

Although the terms palliative care and hospice care are sometimes used interchangeably,
they have slightly different meanings. Palliative care applies to every step of the cancer
process, whereas hospice care is used when the life expectancy is six months or less.

The Palliative Care Team

Several health care professionals may participate as part of a team to give palliative care
Doctor: The doctor serves as the health care team leader; makes treatment plans and
decides on medication and dosing, and may consult with other doctors, such as a pain
specialist or a radiation oncologist. The doctor may visit the patient in the home or may
supervise the care plan without actually seeing the patient.

Nurses: The nurse gives direct care to the patient and helps with managing pain and other
side effects of cancer and its treatment. The nurse also acts as a liaison with the rest of the
health care team. For people in home hospice programs, nurses visit them at home several
times a week and sometimes more than once a day.
Social worker: A social worker may help with financial issues, arrange family meetings,
and helps with the discharge from the hospital to home or hospice care.

Hospital chaplain or other spiritual advisor: A chaplain counsels the patient and family
members on religious and spiritual matters.

Dietitian: A dietitian helps the patient and family members plan healthy meals and
addresses nutritional concerns.

Physical therapist: A physical therapist helps the patient maintain movement and helps
when the patient has difficulty moving around. A physical therapist also addresses safety
concerns in the home.

Grief and bereavement coordinator: This professional counsels the patient and family
members and helps with planning memorial services.

Finding Palliative Care

Here are some organizations that provide information and referrals to hospice and
palliative care organizations:

1) National Hospice and Palliative Care Organization

2) Center to Advance Palliative Care: GetPalliativeCare.org

3) Hospice Education Institute

2) PREPARATION AT THE END OF LIFE

Despite a doctor’s best efforts and hard work, disease treatment sometimes stops working
and a cure or long-term remission is no longer possible. This stage of illness is called
advanced, terminal, or end-stage.

Grieving your losses

 Learning that persons illness has become terminal can bring about intense
feelings of anger, fear, grief, regret, and other strong emotions.
 It is normal to grieve and mourn the loss of your abilities, the loved ones you
will leave behind, and the days you will not have.
 Talking about your feelings and concerns with family, friends, and
caregivers can help bring you comfort.
 Getting your affairs in order, completing unfinished business, and reviewing
your life are important steps in accepting death and finding peace.
Getting your affairs in order

 For many people, worrying about what will happen to their surviving family
members is one of the most difficult aspects of dying.
 Planning ahead to settle legal, financial, and business affairs can also free
you and your family to concentrate on the emotional aspects of completing
your life.
 Settling your affairs may include locating and organizing important legal and
financial documents, such as your will, marriage and birth certificates, social
security card, insurance policies, bank statements, and investment
summaries.
 Some people also find it helpful to plan some aspects of their own funeral.
This can be done with a set of written instructions, or by talking to your
family or close friends about your wishes.
 As you approach the end of your life, there may be certain things you wish to
accomplish in the time you have left. These tasks can help bring a sense of
meaning and completion to your life, and may range from fulfilling a
lifelong dream to more simple experiences, such as re-reading a favorite
book or spending time with those who are important to you.
 Finding peace in important relationships and saying the things that matter
most are also significant aspects of life completion.
 There may be conflicts you wish to resolve or apologies you want to make.
You may want to say goodbye to special people and tell family members
how much you love them. If you are able, you may want to accomplish these
tasks in person, or you may want to pass on a message in writing, by
telephone, or through a family member.
 It may be possible for you to travel to visit special people, or for them to
travel to you. Keep in mind that, despite your best efforts, people may not
respond the way you want them to.
 Some people may not feel comfortable visiting you or may be afraid they
will say the wrong thing.
 You may be comforted by knowing that you have done all you can to heal a
troubled relationship.

Reviewing your life

 It is only natural to want to leave a legacy: evidence that your life mattered
and that you made a difference in the world.
 Take time to reflect on and celebrate the events in your life—the things you
have accomplished, the people you have loved, and the individuals and
events that have shaped you.
 Talk with your family and friends about the times you have spent together
and the memories and events you have shared.
 As you review your life, you may want to record your memories. You can
write down your memories, record them on tape or video, or ask someone to
write for you as you talk.
  Talking about or recording your wishes and dreams for loved ones in the future can
help ease regrets about having to leave them, and help them feel connected to you at
important times throughout their lives.

Religion and spirituality

For some, organized religion is a central part of life and the support of faith and
clergy members are an important source of comfort at the end of life. For others,
spiritual comfort may lie in a sense of connection to nature or people. What matters
is finding such comfort, completion, and peace, which will sustain hope and
meaning.

3) ADVANCED DIRECTIVES

Advance directives are legal documents that explain the kind of medical treatment you
would want and would not want if you become unable to make these decisions for yourself.
 Advance directives protect your rights and preferences for medical treatment and
diminish the burden of family members and other caregivers making decisions for
you. You can protect your rights and preferences for medical treatment by writing
down your wishes in an advance directive and having a witness or witnesses sign
the statement.
 It is important to talk with your family and doctor about your wishes ahead of time,
so they can be aware of your choices.

Making an advance directive

Any adult who is mentally and physically able to understand his or her medical condition
and express his or her preferences can make an advance directive.

I. In most states, an advanced directive can be oral (spoken), although it is less likely
to be challenged if it is in writing.
II. Most, but not all, states honor an advance directive made in other states.
III. If you move to another state, it is a good idea to complete a new advance directive.
It is important that you and other people involved in decisions about your health
care have accessible copies of your advance directive.
IV. Copies should also be given to any institution where you are treated (such as a
hospital, doctor's office, or nursing home) and where you live. At this time, there is
no advance directive form that is valid in all 50 states.
V. Check your state's requirements and guidelines about advance directive documents.

Types of advance directives

a) Living will: This is a written set of instructions outlining your wishes about types
of medical care you may or may not want in order to sustain life. A living will is
also referred to as a Directive to Physicians and Family. It is used in situations
when you have a life-limiting illness and can no longer communicate your wishes
about medical care. A living will can include statements about:
  Whether you want the medical team to use cardiopulmonary resuscitation (CPR)
and/or artificial life support, such as mechanical respirators, if your breathing or
heart stops.

 Whether you would want to receive a feeding tube (artificial nutrition and
hydration), if you cannot be fed otherwise?

 Whether you want certain procedures, such as kidney dialysis performed?

Living wills can be as detailed as needed to make sure that your desires and
wishes for life-sustaining treatments are honored. A living will can also include
directions about donating organs.

b) Durable power of attorney for health care : This type of advance directive
designates a person that will make medical decisions for you if you become unable
to make them yourself. The person you appoint is often referred to as your health
care proxy, agent, or attorney-in-fact, and has authority only over medical
decisions, not other matters, such as finances. Any competent adult, age 18 or older,
can be a health care agent. Your health care agent can make decisions about your
medical care after your doctor certifies in writing that you are no longer able to
make your own decisions. Once you choose a health care agent, you can still make
your own decisions about your medical care; your health care agent will only make
decisions once you are unable to do so. It is important to talk with the person you
are appointing as your health care agent so that he or she knows your wishes.

Once you make an advance directive, you can change it if needed. Changes can be
made as long as you still have or regain your ability to make decisions. You will
need to notify your health care team if you make any changes.

4) UNDERSTANDING CPR AND DNR  

CPR (cardiopulmonary resuscitation) is a combination of chest compressions and rescue

breathing that is given to a person in cardiac arrest (when the heart has stopped beating).
When a person goes into cardiac arrest, the heart stops pumping blood through the body.
CPR can temporarily help a small amount of blood flow to the heart and brain until the
heart begins beating again. CPR may include the following:

 Manual chest compressions (performed using the hands)

 Defibrillation (a brief electric shock applied to the chest to restore a normal heart
rhythm)

 Giving drugs to stimulate the heart

 Mouth-to-mouth breathing

 Bag-valve mask ventilation (the use of a football-size bag, attached to a face mask,
 that is squeezed by hand to push air into the lungs)

 Insertion of an artificial airway, including:

o Nasopharyngeal airway (a flexible rubber tube that is placed into the nose
and guided into the trachea [windpipe])

o Oropharyngeal airway (a hard, plastic piece that is inserted in the mouth and
down the throat to keep the airway open)

o Endotracheal (ET) tube (a flexible plastic tube that is placed through the
mouth and into the trachea [windpipe])

Do not resuscitate (DNR) orders

A DNR order is a type of advance directive, a document that instructs medical personnel
that you do not wish to receive CPR if your heart and/or breathing stops.
Unlike other advance directives that are written and signed by the individual (such as a
living will or a durable power of attorney for health care), a DNR order must be completed
and signed by your doctor or other health care provider, such as a hospice nurse
practitioner.
Once completed, your DNR order is added to your medical record.
Health personnel can only follow a DNR order if they know one exists.

Points to think about when considering a DNR order

Ideally, decisions about end-of-life care should be made early in the care process before
there is a need for them. If you wait until a crisis occurs, it may be too late for you to
communicate your wishes about a DNR order or other advance directives.

Open communication with your loved ones and with your doctors and nurses will allow
them to guide you through the complicated maze of instructions, paperwork, and
formalities. More importantly, it will allow them to serve you well and personalize your
care.

5) CARE DURING THE FINAL DAYS 

If treatment is no longer able to slow or halt the growth of disease, the disease develops to
what is known as advanced or end-stage. Treatment for end-stage focuses on keeping the
person comfortable and free of pain as he or she approaches the end of life. It is important
to know that care will continue until the end of life and that everything possible will be
done to ensure that death will be peaceful and dignified
KÜBLER-ROSS’S FIVE STAGES OF DYING

STAGE NURSING IMPLICATIONS

Denial : “This cannot be true.” Feelings of isolation. May search for another health
care professional who will give a more favorable opinion. May seek
unproven therapies.
Anger : “Why me?” Feelings of rage, resentment or envy directed at God, health
care professionals, family, others.
Bargaining : “I just want to see my grandchild’s birth, then I’ll be ready. . . .” Patient
and/or family plead for more time to reach an important goal. Promises
are sometimes made with God.
Depression : “I just don’t know how my kids are going to get along after I’m gone.”
Sadness, grief, mourning for impending losses.
Acceptance : “I’ve lived a good life, and I have no regrets.” Patient and/or family are
neither angry nor depressed.

Choices For Care

 Even if a cure or long-term remission is no longer possible, a person still has

choices for care. Some people decide to stop active treatments, such as
chemotherapy, that can cause unpleasant side effects.
 Other people with end-stage cancer choose to receive additional medical treatments
and to continue with both palliative care and active treatment. For some,
participation in a clinical trial or investigational treatment is another option.
 Many people with end-stage cancer decide to enter hospice care.
Hospice care focuses on care to those who expect to live six months or less. Most hospice
care takes place in the person's home, but hospice care is also available in hospitals and
private hospice and nursing home facilities. Because of the availability of hospice
programs and other home care services, people with end-stage cancer can often choose
where they would like to spend their last days, whether at home, in a hospital, or in a
private facility

The Signs Of Approaching Death

The following signs show that a person with cancer is entering the final weeks of life.

 Progressive weakness and exhaustion

 Needing to sleep much of the time, often spending most of the day in bed or resting

 Weight loss and muscle wasting

 Loss of appetite and difficulty eating or swallowing fluids

  Decreased ability to talk and to concentrate

 Loss of interest in things that were previously important

 Loss of interest in the outside world and wanting only a few people nearby. The
person with cancer may want only a few people to visit, or may need to limit the
time spent with visitors.

 Breathing becomes slower, sometimes with very long pauses between breaths

 Congestion with gurgling or rattling sounds when breathing as the person becomes
unable to clear secretions from the throat

 Skin becomes cool, especially the hands and feet, and may turn a bluish color

 Dry mouth and dry or cracked lips

 Decreased amount of urine

 Incontinence (loss of bladder and bowel control)

 Physical restlessness or repetitive, involuntary movements

 Disorientation and confusion about time, place, and identity of people, including
family and close friends

 Hallucinations (seeing or hearing things that are not there). These are normal and
are not a cause for concern unless they scare or upset the person with cancer.

 Drifting in and out of consciousness, possibly entering a coma

Providing Comfort

As a family member or caregiver, there are things you can do to help make the person
more comfortable as death approaches.

If he or she is receiving hospice care, the hospice staff will show you how to provide
general care and comfort measures.
If the person is in a hospital or other facility, ask the staff how family members can be
involved in caregiving. Some general guidelines for providing comfort are listed below.
Each family is encouraged to form a plan with the health care team that best matches the
person's needs.

 Use an eggshell mattress or foam cushions to make beds and chairs more
comfortable. Help the person change positions frequently and change bedsheets at
least twice a week or more frequently, as necessary.
 As much as possible, elevate the person's head, or turn the person on to his or her
side, to help make breathing easier.

 Use blankets to help keep the person warm. Do not use electric blankets as they can
cause burns. Gently rub the person's hands and feet, or soak the hands and feet in
warm water.

 To ease confusion and disorientation, speak in a clear, calm voice and remind the
person of the time, place, and who is there with him or her. However, sometimes
speaking clearly may not help when there is delirium (mental confusion).

 If the person can swallow, offer sips of liquid through a straw or from a spoon to
help keep the mouth moist. Glycerin swabs and lip balm also help with dry mouth
and lips.

 A gentle massage can be comforting and can help with blood circulation and dry
skin. Use a lotion without alcohol, which tends to further dry the skin.

 Just sitting with and talking to, gently touching, or holding hands with the person is
one of the best ways to give comfort and reassurance. Often, just being with a loved
one is all that is needed so he or she does not feel alone.

Controlling pain

Controlling pain is an important part of dying comfortably and peacefully.

Uncontrolled pain can cause other symptoms to worsen, such as fatigue and confusion,
and can make it more difficult to concentrate on time spent with family and others who
care about the person. As cancer develops to an advanced stage, pain can worsen and
become more difficult to control. However, no one should expect to have to tolerate
significant pain and a variety of pain control measures can be used. Doctors who
specialize in pain management and palliative care can help manage pain that is difficult
to control.

The doctor and the health care team need to know what type of pain is felt and what
methods have and have not worked to control the pain. Some people may talk more
openly about pain than others because of different cultural backgrounds

When To Call For Help

If you are caring at home for someone with cancer, ask the hospice or home care staff
for guidance on when and whom to call for help. The following are some situations that
require assistance from a trained professional:

 Pain that is difficult to manage or relieve

 Inability to take the prescribed medications

  Signs of distress (pain, breathing problems, agitation)

 A sudden change in the level of consciousness or a seizure

 Situations that overwhelm the caregivers at home

If the person is acting in ways you do not understand or showing behavior that you feel
unsure how to manage, it is important to call for help.

Respecting Final Wishes

Many people with end-stage cancer choose to prepare advance directives.

For example, some people nearing the end of life choose to not receive artificial life
support, such as mechanical respirators or a feeding tube, and may request a do not
resuscitate (DNR) order stating that the person not be revived if his or her breathing or
heartbeat stops. Caregivers and others who care about the person may not always agree
with the decisions outlined in an advance directive. However, having the person’s final
wishes respected and followed is an important need for people with an advanced illness.

Immediately After Death

When death occurs, the person's muscles will relax, breathing will stop, the heart will stop
beating, and there will be no pulse. Even when death is expected, shock and disbelief is
common.

Hospice staff or the person's doctor should be notified within a few hours, but a natural
death is not an emergency and medical personnel do not need to be called immediately.
Many people find it comforting to take some time to sit with their loved one, perhaps
talking quietly, just holding hands, or seeing their loved one at peace.

6) CARING FOR A TERMINALLY ILL CHILD: A GUIDE FOR

PARENTS.

Despite everyone's best efforts, it may not be possible for doctors to cure your child's
illness. However, children with advanced (or terminal) disease can live for many months or
sometimes years with their illness.
During this time, treatment should focus on controlling the underlying disease and
symptoms, so the child can enjoy a high quality of life for as long as possible.
Parents play a crucial role in helping their child continue to live a fulfilling and
comfortable life, as well as helping their child prepare for a peaceful and dignified death.

Palliative care and hospice care

Palliative care is treatment to help a child with disease be more comfortable and live well
at every stage of their disease. Palliative care focuses on treating pain and all other physical
symptoms caused by cancer or its treatment, but does not treat itself. In addition, palliative
care addresses the psychological, social, and spiritual needs of the child and family.
Parents may be reluctant to discuss palliative care, as they may see it as “giving up” on
treatment. However, palliative care is not an alternative to curative treatment. Children
with cancer can receive palliative care and curative treatment at the same time. Palliative
care should begin at the time of diagnosis and continue throughout the course of cancer.

Hospice care focuses on quality of life during the last months of life. Current regulations
limit hospice care to the last six months of life and exclude patients who are still receiving
curative treatment. Because many children with advanced disease continue to receive
curative treatment throughout the course of their illness, they may not be eligible for
hospice care, but they can continue to receive palliative care services. Both palliative and
hospice services can be provided at home, in a hospital, or in a private care facility.

The need to talk with your child

Talking with your child about a serious illness, and especially about his or her own death,
is probably the most difficult step in caring for a child with advanced cancer.

Many parents believe they can protect their child by not telling him or her the truth.
However, most children already know or suspect that they are dying.
They sense the truth from listening to and watching the adults around them, as well as from
experiencing the changes inside their body.
It is important to be honest and open; allow your child to discuss his or her fears and
questions.
If your child senses he or she cannot talk with you, he or she may feel isolated, lonely, and
more afraid. Not talking about your child's death also prevents both you and your child
from bringing closure to his or her life—by sharing memories, expressing love, and saying
good-bye.
You may find some of the questions your child asks about death upsetting. Knowing how
your child views death will help you understand and respond to these questions.
A major factor influencing your child's understanding of death is his or her developmental
level. Preschool-aged children are too young to understand the concept of death, but they
do fear separation. They need extra reassurance with frequent touches and hugs.
School-aged children are just beginning to understand death, but their understanding is not
well developed. They may view death as a separation or as a person, such as a ghost or an
angel.
Teenagers have a more adult understanding of death, but this understanding directly
challenges their feelings of immortality and their growing need for independence.

How to talk with your child about death

While talking about death and dying is always difficult, it can be more difficult for some
families and individuals than for others. Your family dynamics and communication style
influence this conversation..
In addition to advice from social workers, nurses, or other specialists, the following tips
may be helpful:

 Ask open-ended questions that give your child the chance to answer in his or her
own way. For example, ask, "How did you feel when Grandma died?" rather than a
 "yes–no" question, such as "Were you sad when Grandma died?"

 Look for hidden meanings in your child's questions or comments. For example, if
your child asks, "What do you think happened to Grandma after she died?" your
child may also be asking what will happen to him or her.

 Look for "teachable moments"—everyday moments that are opportunities talk

about what your child is thinking and feeling. Teachable moments could be an
animal dying or the illness of a character in a book or a movie.

 Younger children may find it easier to communicate through play or art. Your child
may find it easier to talk about the feelings of his or her sick teddy bear or a child in
a picture.

 Look for signals from your child that he or she is ready to talk, such as asking you
questions or bringing up the subject of death, even if it is the death of an animal or
an imaginary person.

 Look for signals that your child is done talking for the moment, such as changing
the subject, looking away, fidgeting, or playing with toys rather than listening to
you. It is important to respect your child's need to drop the conversation.

The following are additional points to keep in mind when talking with your child about
death:

 Use simple, direct language that your child can understand. Use the words, death
and dying, rather than misleading or confusing terms, such as passing away or
going to sleep.

 Have many conversations with your child, and let him or her know that you or
someone else is always available to talk. Encourage, but don't force your child to
express emotions—positive and negative.

 Reassure your child that he or she will not be alone. It is critical that children know
their parents will be with them when they die and that parental love and support
will continue.

 Reassure your child that after death, any pain and suffering go away and never
come back.

 Children need to know that they made a difference in the lives of others. Remind
your child of the special things he or she has done and the teachers, friends, nurses,
and others who will always remember him or her. Reassure him or her that your
special feelings and love will continue forever.

 Discuss your family's religious or spiritual beliefs about death and what happens
after death.
  Many dying children feel guilty for leaving their parents and worry about what will
happen to their family without them. You may need to give your child "permission"
to die, so he or she can do so peacefully and without guilt.

Meeting your child's needs

Although parents often feel powerless caring for a child with advanced disease, there are
many things that can be done to help meet child's psychosocial and physical needs.
 Give child time to play and engage in other age-appropriate activities, such as
watching television, reading, or playing outside.

 Encourage child to continue attending school, even if he or she cannot attend full
time. If child must miss school for a long time, ask the teacher to have the class
write letter, draw pictures, or make videotapes.

 Encourage child to maintain friendships and other meaningful relationships.

 Encourage child to continue setting goals. Short-term goals, such learning to read
or taking a special trip, help children gain a sense of achievement and give meaning
to their lives.

As your child's cancer progresses and death approaches, your child will have additional
needs.

 Give your child as much privacy and independence as possible, in his or her
personal care, decision-making, and the desire to be alone.

 Encourage child's end-of-life wishes, such as giving away special belongings or

writing letters to friends.

 Stick to comfortable routines. If possible, try to keep the same caregivers.

 Continue to make caregivers and medical staff aware of child's physical needs,
especially the need for pain management.

Help for parents

Parents are not supposed to outlive their children, and nothing can erase the anguish and
distress that parents experience caring for a child with advanced disease. The following are
suggestions to help parents cope:

 It is normal to experience emotions such as anger, guilt, and frustration. Talk with
spouse, family members, or friends about feelings and fears.

 Seek support from a professional grief counselor or attend a support group with
other parents. The hospital staff can help you locate a counselor or support group.

 The dual role of parent and caregiver can be physically and emotionally exhausting.
Take advantage of offers for help from family and friends. Use respite care services
 to allow yourself a break from caregiving.

 Ask the medical staff to go over symptoms that occur close to death, such as skin
and respiratory changes. Knowing what to expect will help you feel more prepared
and enable you to be with your child when death occurs.

 Take time to just be with your child and tell him or her how much you love him or
her. Some parents and children, as well as siblings, find it helpful to look through
photo albums and share stories and memories of times spent together.

7) HOSPICE CARE
Hospice care is a program in local communities to help people with terminal disease who
are coping with a limited life expectancy receive care by trained professionals.
The emphasis of hospice care is on

Relieving pain and discomfort

Assisting the person

Many people with terminal illness feel overwhelmed when their doctor tells them there is
little chance that treatment will cure or reverse the disease. Hospice can help by focusing
on individual needs and goals. Hospice care allows a person to approach the end of life
with confidence in comfort, peace, and dignity.

According to the National Hospice and Palliative Care Organization, most hospice care
takes place in the home, although there are some freestanding hospice centers, hospitals,
nursing homes, and other long-term care facilities that provide hospice care.

Eligibility Criteria For Hospice Care

General
• Serious, progressive illness
• Limited life expectancy
Hospice-Specific
• Presence of a family member or other caregiver continuously in the home when the
patient is no longer able to safely care for him/herself
Medicare and Medicaid Hospice Benefits
• Life expectancy of 6 months or less
• Physician certification of terminal illness

Hospice care is available for situations when all treatments to cure the disease no longer
work and the patient and caregivers are comfortable with a treatment plan dedicated to
maintaining comfort. If the condition improves or the disease goes into remission
(temporary or permanent absence of symptoms), hospice care can be discontinued and
active cancer treatment can resume. As necessary, hospice care can begin again at a later
time.

The hospice team

For hospice to be successful in achieving its goals, it requires a discussion among the
patient, his or her caregivers, and a variety of medical, nursing, and other health care
professionals. Here is a list of professionals that may be a part of the hospice team. Not all
hospices offer services by all of these professionals, so it is important to ask which
members will be a part of the team.

 A doctor who serves as the medical director of the team

 Nurses who provide direct care and case management

 Home health aides, including bath aides, to assist with basic needs

 Social workers

 Chaplains and pastoral care counselors

 Physical, occupational, and rehabilitation therapists

 Dietitians

 Trained hospice volunteers

 Bereavement counselors

The hospice team works closely with the patient and the family or caregivers to develop a
plan of care tailored to meet the unique needs of the situation. The hospice staff is also
responsible for meeting with the patient and family to explain their approach to care and
the types of services offered.

Working with the hospice team

The hospice staff regularly meets with the patient to evaluate his or her medical and
comfort needs and provides any needed services under the supervision of a doctor. This
plan of care will include measures to manage pain and other symptoms and support for the
patient and family. The hospice staff is on call 24 hours a day, seven days a week.

Hospice at home

A family member or close friend serves as the primary caregiver in the home and should be
prepared to assume the majority of the responsibility in caring for the patient. The hospice
staff regularly meets with the patient and caregivers. Even at home, the hospice staff is on
call 24 hours a day, seven days a week.

Hospice care outside the home

Hospice care is also delivered in hospitals and other inpatient facilities. If admitted to an
inpatient hospice facility, the location and hours should be convenient for visits by family
and friends; provide peace and quiet; and ensure privacy for the patient, family members,
and other visitors.

Medicare hospice benefits

Medicare is a federal health insurance program for people age 65 years and older, some
disabled people under age 65, and people of all ages with end-stage renal disease
(permanent kidney failure treated with dialysis or a transplant.
The Medicare Hospice Benefit allows all Medicare beneficiaries to get the benefits of
hospice care. To be eligible, a doctor must determine that the patient has a limited life
expectancy of six months or less if the condition runs its natural course. The patient will be
required to sign a statement choosing hospice care instead of other Medicare benefits to
treat the illness. Under Medicare, hospice is primarily delivered in the home setting by a
Medicare-approved hospice provider and covers:

 Services provided by the doctors

 Nursing visits to the home with 24-hour on-call services

 Medical appliances and supplies related to the life-limiting illness

 Medications to manage symptoms and relieve pain

 Short-term, acute care either in a hospital or nursing home, including respite care.
Inpatient respite care is provided to give family caregivers temporary relief.

 Home health aide and homemaker services

 Supportive counseling

 Spiritual support and counseling

 Nutritional counseling

 Bereavement support for your family

SPIRUTUALITY AT THE END OF LIFE

As your loved one approaches the end of life, he or she may talk about spirituality or the
meaning of life. Don't force the subject — but if it comes up, encourage your loved one to
explore and address his or her feelings. You might ask your loved one open-ended
questions about his or her beliefs and experiences. You may want to invite a spiritual leader
to visit your loved one as well. Spirituality contains features of religiosity, but the two
concepts are not interchangeable. Spirituality involves the “search for meaning and purpose
of in life and relatedness to transcendent dimensions”. The spiritual assessment is a key
component of comprehensive nursing assessment for terminally ill patients and their
families. The nurse should explore:

 The harmony or discord between the patient’s and family’s beliefs.

 Other sources of meaning, hope, and comfort.

 The presence or absence of a sense of peace of mind and purpose of life.

 Spiritually or religiously based beliefs about illness, medical treatment, care of the
sick.

CONCLUSION

Care at the end of life focuses on making patients comfortable. They still receive medicines
and treatments to control pain and other symptoms. Some patients choose to die at home.
Others enter a hospital or a hospice. Either way, services are available to help patients and
their families deal with issues surrounding death

JOURNAL ABSRACT

Valente SM. Conducted a study on End-of-life challenges: honoring autonomy in a

Journal Cancer Nursing on August 27, 2009. The abstract of the study was

Patients' end-of-life decisions challenge nurses to improve palliative care, symptom

management, and patient advocacy, and examine ethical issues. When terminally ill
patients take charge of the last stages of life, they may challenge nurses to reexamine
attitudes about lifesaving technology and autonomy and values about preserving life. Staff
members can become benevolent and believe that they know what is best despite the
patient's independent decisions. When patients unsuccessfully decline continued
aggressive, life prolonging strategies, they may decide to hasten dying rather than accept a
natural death. Researchers defined desire for hastened death as a unifying construct
underlying requests for assisted suicide, euthanasia, and withdrawal of food and fluids.
When a terminally ill patient considers a hastened death, the nurse needs to examine the
patient's mental health, symptom management, advance directives, and decision making.
Medical and psychological symptoms and spiritual distress often trigger thoughts of
hastening death even when pain and symptoms have been treated.

Wainwright P, Gallagher A. conducted a study on Ethical aspects of withdrawing and

withholding treatment in a Journal Nursing Standard on April 25, 2009. The Abstract
of the study is

Decisions about withdrawing and withholding treatment are common in health care.
During almost every encounter between health professionals and patients a decision
needs to be made about treatment options. In most cases these choices do not pose
any difficulty, for example, starting antibiotics when a patient has an infection.
 However, decisions not to treat, or to stop treating, raise fundamental questions
about the nature and purpose of nursing and the ethics of end-of-life care. This
article argues that nurses need to be proactive in deciding what is nursing care and
what is treatment. An ethical distinction is drawn between acts and omissions. How
this distinction relates to withdrawing and withholding treatment will be considered.
Further ethical issues discussed relate to judgements about the futility of treatment,
patient autonomy and nurses' duty of care to patients at the end of life.

BIBLIOGRAPHY

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4. Barbara Kozier, Glenora Erb, “Fundamentals Of Nursing”, 7 th Edition, Pearson

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5. Joyce. M. Black, “Medical- Surgical Nursing”, Volume I, 7 th Edition, Saunder

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7. http:/en.wikepedia.org/wiki/end-of-lifecare