END OF LIFE Care
END OF LIFE Care
END OF LIFE Care
1. Introduction:
Life and death is the two main stages in a human beings life, where we come across many
challenges, diseases, and other problems. Olden days persons with chronic diseases, terminal
illness and dying is viewed as taboo topics, due to which few new concept developed for the care
of person who is at their end stage, one of those topics is end of life.
2. Definition:
End of life: It is the concluding phase of normal lifespan although life can end at any age
3. Goals:
Provide comfort and supportive care during process
Improve the quality of remaining life
Help to ensure dignified death
4. Terminologies:
Advance directives: Advanced care directives are specific instructions, prepared in advance,
intended to direct a person's medical care in the event that he/she is unable to do so in the future.
Bereavement: it is an individuals response to the loss of a significant person.
Cheyne-stoke respiration: a striking form of breathing in which there is a cyclical variation
in the rate. This becomes slower until breathing stops for several seconds before speeding up to a
peak and then slowing again.
Death: Legal definition of death, in most states, requires "irreversible cessation of all
functions of the entire brain, including the brain stem."
Death rattle: inability to cough or clear secretions resulting in grunting.
Hospice: A special concept of care designed to provide comfort and support to patients and
their families when a life-limiting illness no longer responds to cure-oriented treatments.
Palliative: a medicine that gives temporary relief from the symptoms of diseases but actually
does not cure the disease
Durable power of attorney : A legal document that allows an individual to appoint someone
else (proxy) to make medical or health care decisions, in the event the individual becomes unable
to make and/or communicate such decisions personally.
Medical power of attorney: its a term which describes a document used for listing the
person to make health care decisions when the patient is unable to make decisions for self.
Directive to physicians: A written document specifying the patients wish to be allowed to die
without heroic or extraordinary measures.
5. Physical changes at end of life:
Sensory changes: its mainly due to decrease oxygenation and circulatory changes
Hearing & touch: decreased perception of pain, touch & sensation
Taste & smell: Decreases with disease progression, blurring of vision, blinking reflex absent.
Integumentary system: cold, clammy skin. Wax like skin due to loss of muscle tone, cyanosis
on nose, nail beds, knees due to decrease oxygenation and circulatory changes.
Cardiovascular system: pulse rate increases and slows down later& becomes weak, bloodpressure decreases, elevation in the body temperature due to changes in hypothalamic function,
and delayed absorption of drugs.
Respiratory system: increased respiratory rate, Cheyne stroke respiration, death rattle
irregular breathing.
Urinary system: urinary output decreases due to loss of ability to form urine, incontinence of
urine & unable to urinate.
Gastrointestinal system: slowing of digestive tract, accumulation of gas due to decrease
gastric motility and peristalsis which lead to constipation.
Musculoskeletal system: gradual loss of ability to move, difficulty in speaking & swallowing,
maintaining body posture, due to weakening of muscular system because of metabolic changes.
6. Psychological changes at the end of life:
A variety of feelings and emotions affect the dying patient and family at the end of life. most
patients and family struggle with a terminal diagnosis and the realization that there is no cure
Grief: it is a emotional and behavioral changes to loss , it is a positive coping mechanism
which also helps in individual wellbeing
Stages of grief
Denial:
Denial is usually only a temporary defense for the individual. This feeling is generally replaced
with heightened awareness of situations and individuals that will be left behind after death. [1]
Example - "I feel fine."; "This can't be happening, not to me."
Anger:
Once in the second stage, the individual recognizes that denial cannot continue. Because of
anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any
individual that symbolizes life or energy is subject to projected resentment and jealousy.
[1] Example - "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
Bargaining:
The third stage involves the hope that the individual can somehow postpone or delay death.
Usually, the negotiation for an extended life is made with a higher power in exchange for a
reformed lifestyle. Psychologically, the person is saying, "I understand I will die, but if I could
just have more time..." [1] Example - "Just let me live to see my children graduate."; "I'll do
anything for a few more years."; "I will give my life savings if.
Depression:
During the fourth stage, the dying person begins to understand the certainty of death. Because of
this, the individual may become silent, refuse visitors and spend much of the time crying and
grieving. This process allows the dying person to disconnect themselves 460
from things of love and affection. It is not recommended to attempt to cheer an individual up that
is in this stage. It is an important time for grieving that must be processed. [1] Example - "I'm so
sad, why bother with anything?"; "I'm going to die . . . What's the point?"; "I miss my loved one,
why go on?"
Acceptance:
This final stage comes with peace and understanding of the death that is approaching. Generally,
the person in the fifth stage will want to be left alone. Additionally, feelings and physical pain
may be non-existent. This stage has also been described as the end of the dying struggle. [1]
Example - "It's going to be okay."; "I can't fight it, I may as well prepare for it." 7. Ethical, legal
and communication issues at end of life: Assessing decision making capacity: the physician
must assess the patient's decision making capacity before concluding that a given individual
cannot speak for himself or herself. An assessment of decision making capacity can and should
be performed by the primary physician; determining decision capacity for a specific medical
intervention requires neither legal intervention nor psychiatric expertise. On the other hand,
decisions about competence are judicial determinations that involve ruling on the patient's global
decision making ability. Competency determinations are necessary when evaluating the capacity
of a person to make non-medical decisions, such as financial matters. Patients and families
struggle with many decisions during the terminal illness and dying experience. Many people
decide that the outcomes related to their care should be based on their own wishes. The decisions
may involve the choice for
Legal documents used in end of life care:
Advance directives: Advanced care directives are specific instructions, prepared in advance,
intended to direct a person's medical care in the event that he/she is unable to do so in the future.
Durable power of attorney : A legal document that allows an individual to appoint someone
else (proxy) to make medical or health care decisions, in the event the individual becomes unable
to make and/or communicate such decisions personally.
Medical power of attorney: its a term which describes a document used for listing the
person to make health care decisions when the patient is unable to make decisions for self.
Directive to physicians: A written document specifying the patients wish to be allowed to die
without heroic or extraordinary measures.
Under this acts patient can tell the physician that what treatment is or is not desired. Verbal
directives are given to physicians with specific instructions in the presence of two witnesses in
case if person is not able to communicate his wishes, the family and physician will decide what
to be and what not to be done and the decision taken by the family should be recorded by
physician.
Organ and tissue donation: persons who are legally competent may choose organ donation.
Any body part or the entire body may be donated. The decisions to donate organs or to provide
anatomic gifts may be made by a person before death .and family permission must be obtained at
time of donation. These peoples will have the ID card
given by the agencies. The physicians must be notified immediately when organ donation is
intended because some tissues must be used within hours after death
Euthanasia:
Refers to the practice of ending a life in a painless manner. Many different forms of euthanasia
can be distinguished, including animal euthanasia and human euthanasia, and within the latter,
voluntary and involuntary euthanasia. Voluntary euthanasia and physician-assisted suicide have
been the focus of great controversy in recent years.
Euthanasia by consent: Euthanasia may be conducted with consent (voluntary euthanasia) or
without consent (involuntary euthanasia). Involuntary euthanasia is conducted where an
individual makes a decision for another person incapable of doing so. The decision can be made
based on what the incapacitated individual would have wanted, or it could be made on
substituted judgment of what the decision maker would want were he or she in the incapacitated
person's place, or finally, the decision could be made by assessing objectively whether euthanasia
is the most beneficial course of treatment. In any case, euthanasia by proxy consent is highly
controversial, especially because multiple proxies may claim the authority to decide for the
patient and may or may not have explicit consent from the patient to make that decision.
Euthanasia by means: Euthanasia may be conducted passively, non-actively, and actively.
Passive euthanasia entails the withholding of common treatments (such as antibiotics,
chemotherapy in cancer, or surgery) or the distribution of a medication (such as morphine) to
relieve pain, knowing that it may also result in death (principle of double effect). Passive
euthanasia is the most accepted form, and it is a common practice in most hospitals. Non-active
euthanasia entails the withdrawing of life support and is more controversial. Active euthanasia
entails the use of lethal substances or forces to kill and is the most controversial means. An
individual may use a euthanasia machine to perform euthanasia on him / her.
Assisted suicide: Assisted suicide is a form of euthanasia where the patient actively takes the
last step in their death. The term "assisted suicide" is contrasted with "active euthanasia" when
the difference between providing the means and actively administering lethal medicine is
considered important. For example, Swiss law on assisted suicide allows assisted suicide, while
all forms of active euthanasia (like lethal injection) remain prohibited. Resuscitation: in recent
days its the right of the patient and the family to Decide whether resuscitation to be done. For
every patient physician order is compulsory for the use of CPR
Types of CPR decisions:
Full code: which allows CPR drugs and mechanical ventilation?
Chemical code: allows use of chemical drugs but no CPR.
No code or DNR: which allows the person to die comfortably without interference of the
technology?
Advanced directives, organ donor information and Dr. Orders should be recorded in both medical
and nursing record. 462
Hospice care services: There are many things about hospice care that set it apart from other
types of health care. A team of professionals In most cases, an interdisciplinary health care team
manages hospice care. This means that many interacting disciplines work together to care for the
patient. Doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and
trained volunteers care for you. Each of these people offers support based on their special areas
of expertise. Together, they then give you and your loved ones complete palliative care aimed at
relieving symptoms and giving social, emotional, and spiritual support.
Pain and symptom control: The goal of pain and symptom control is to help you be
comfortable while allowing you to stay in control of and enjoy your life. This means that side
effects are managed to make sure that you are as free of pain and symptoms as possible, yet still
alert enough to enjoy the people around you and make important decisions. To learn more on this
topic, please see our document, Spiritual care
Hospice care also tends to your spiritual needs. Since people differ in their spiritual needs and
religious beliefs, spiritual care is set up to meet your specific needs. It may include helping you
to look at what death means to you, helping you say good-bye, or helping with a certain religious
ceremony.
People may think that they are not forgiven by god for their mistakes, as a nurse its our
responsibility to assess their spiritual needs and help them to meet their spiritual needs to
improve the harmony of the patient and family.
Home care and inpatient care Although hospice care can be centered in the home, you may need
to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. The hospice
can arrange for inpatient care and will stay involved in your care and with your family. You can
go back to in-home care when you and your family are ready. Respite care: While you are in
hospice, your family and caregivers may need some time away.. Hospice service may offer them
a break through respite care, which is often offered in up to 5-day periods. During this time you
will be cared for either in the hospice facility or in beds that are set aside for this in nursing
homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get muchneeded rest at home while you are cared for in an inpatient setting. Family conferences:
Through regularly scheduled family conferences, often led by the hospice nurse or social worker,
family members can stay informed about your condition and what to expect. Family conferences
also give you all a chance to share feelings, talk about expectations, and learn about death and
the process of dying. Family members can find great support and stress relief through family
conferences. Conferences may also be done informally on a daily basis as the nurse or nursing
assistant talks with you and your caregivers during their routine visits. Bereavement care:
Bereavement is the time of mourning after a loss. The hospice care team works with surviving
loved ones to help them through the grieving process. A trained volunteer, clergy member, or
professional counselor provides support to survivors through visits, phone calls, and/or letter
contact, as well as through support groups. The hospice team can refer family members and caregiving friends to other medical or professional care if needed. Bereavement services are often
provided for about a year after the patient's death.
Volunteers: Hospice volunteers play an important role in planning and giving hospice care in
the United States. Volunteers may be health professionals or lay people who provide services that
range from hands-on care to working in the hospice office or fundraising.
Staffs support: Hospice care staff members are kind and caring. They communicate well, are
good listeners, and are interested in working with families who are coping with a life-threatening
illness. They are usually specially trained in the unique issues surrounding death and dying. Yet,
because the work can be emotionally draining, it is very important 464
that support is available to help the staff with their own grief and stress. Ongoing education about
the dying process is also an important part of staff support.
Coordination of care: The interdisciplinary team coordinates and supervises all care 7 days a
week, 24 hours a day. This team is responsible for making sure that all involved services share
information. This may include the inpatient facility, the home care agency, the doctor, and other
community professionals, such as pharmacists, clergy, and funeral directors. You and your
caregivers are encouraged to contact your hospice team if you are having a problem, any time of
the day or night. There is always someone on call to help you with whatever may arise. Hospice
care assures you and your family that you are not alone and help can be reached at any time.
Hospice care settings: Hospice care is defined not only by the services and care provided, but
also by the setting in which these services are delivered. Hospice care may be provided in your
home or in a special facility. Most cancer patients choose to get hospice care at home. In fact,
more than 90% of the hospice services provided in this country is based in patients' homes.
Before making a decision about the type of program that is best for you and your family, it is
important to know all your options and what each requires. Your doctor, hospital social worker,
or discharge planner can be very helpful in deciding which program is best for you and your
family.
Home hospice care: Many, if not all, of the home health agencies in your community, as well as
independently owned hospice programs, will offer home hospice services. Although a nurse,
doctor, and other professionals staff the home hospice program, the primary caregiver is the key
team member. The primary caregiver is usually a family member or friend who is responsible for
around-the-clock supervision of the patient. This person is with the patient most of the time and
is trained by the nurse to provide much of the hands-on care. It is important to know that home
hospice may require that someone be home with you at all times. This may be a problem if you
live alone, or if your partner or adult children have full-time jobs. But creative scheduling and
good team work among your friends and loved ones can overcome this problem. Members of the
hospice staff will visit regularly to check on you and your family and give needed care and
services. Care begins when you are admitted to the program, which generally means that a
hospice team member visits the home to learn about your situation and needs. Return visits are
set up so that your needs can be re-evaluated regularly. To handle around-the-clock patient needs
or crises, home hospice programs have an on-call nurse who answers phone calls day and night,
makes home visits, or sends the team member you may need between scheduled visits.
Medicare-certified hospices must provide nursing, pharmacy, and doctor services around the
clock. Hospital-based hospices: Hospitals that treat seriously ill patients often have a hospice
program. This arrangement allows patients and their families easy access to support services and
health care professionals. Some hospitals have a special hospice unit, while others use a hospice
465
team of caregivers who visit patients with advanced disease on any nursing unit. In other
hospitals, the staff on the patient's unit will act as the hospice team. Independently owned
hospices: Many communities have free-standing, independently owned hospices that feature
inpatient care buildings as well as home care hospice services. As with long-term care facility
hospice programs, the free-standing hospice can benefit patients who do not have primary
caregivers available at home.
Palliative: definition given by whom.
Palliative care is an approach that improves the quality of patients and their families facing the
problem associated with life threatening illness, through the prevention and relief of suffering by
means of early identification and impeccable assessment and treatment of pain and other
problems, physical, psychological, and spiritual.
Goals of Palliative Care:
To prevent or treat as early as possible the symptoms of the disease, side effects caused by
treatment of the disease
To prevent or treat psychological, social, and spiritual problems related to the disease or its
treatment.
To help people with life-threatening disease to live more comfortably.
Palliative care emphasizes management of psychological, social, and spiritual problems in
addition to control of pain and other physical symptoms. As the definition suggests, palliative.
Care is not care that begins when cure-focused treatment ends.
The goal of palliative care is to improve the patients and families.
Quality of life and many aspects of this type of comprehensive, comfort-focused approach to
care are applicable earlier in the process of life-threatening disease in conjunction with cure
focused treatment.
In addition to a focus on the multiple dimensions of the illness experience for
Both patients and their families, palliative care emphasizes the interdisciplinary collaboration
that is necessary to bring about the desired outcomes for patients and their families.
Palliative interventions affirm life and neither hastens nor postpones death.
Appropriate palliative care and a supportive environment promote of life and health closure
for the client and family.
9. Physical manifestations as death approaches and the nursing management: Certain signs
and symptoms can help a caregiver anticipate when death is near. They are described below,
along with suggestions for managing them. It is important to remember that not every patient
experiences each of the signs and symptoms. In addition, the presence of one or more of these
symptoms does not necessarily indicate that the patient is close to death. A member of the
patient's health care team can give family members and caregivers more information about what
to expect.
Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient's
metabolism).
The caregiver and family members can plan visits and activities for times when the patient is
alert. It is important to speak directly to the patient and talk as if the person can hear, even if
there is no response. Most patients are still able to hear after they are no longer able to speak.
Patients should not be shaken if they do not respond.
Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased
blood flow, and mental preparation for dying).
Speak to the patient directly. Let the patient know you are there for them. The patient may be
aware and able to hear, but unable to respond. Professionals advise that giving the patient
permission to let go can be helpful.
Decreased need for food and fluids, and loss of appetite (caused by the body's need to
conserve energy and its decreasing ability to use food and fluids properly).
Allow the patient to choose if and when to eat or drink. Ice chips, water, or juice may be
refreshing if the patient can swallow. Keep the patient's mouth and lips moist with products such
as glycerin swabs and lip balm.
Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area).
Keep the patient as clean, dry, and comfortable as possible. Place disposable pads on the bed
beneath the patient and remove them when they become soiled.
Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or
decreased fluid intake).
Caregivers can consult a member of the patient's health care team about the need to insert a
catheter to avoid blockage. A member of the health care team can teach the caregiver how to take
care of the catheter if one is needed.
Skin becomes cool to the touch, particularly the hands and feet; skin may become bluish in
color, especially on the underside of the body (caused by decreased circulation to the
extremities).
Blankets can be used to warm the patient. Although the skin may be cool, patients are usually not
aware of feeling cold. Caregivers should avoid warming the patient with electric blankets or
heating pads, which can cause burns.
Rattling or gurgling sounds while breathing, which may be loud; breathing that is irregular
and shallow; decreased number of breaths per minute; breathing that alternates
between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of
waste products in the body, and/or a decrease in circulation to the organs).
Breathing may be easier if the patient's body is turned to the side and pillows are placed beneath
the head and behind the back. Although labored breathing can sound very distressing to the
caregiver, gurgling and rattling sounds do not cause discomfort to the patient. An external source
of oxygen may benefit some patients. If the patient is able to swallow, ice chips also may help. In
addition, a cool mist humidifier may help make the patient's breathing more comfortable.
Increased difficulty controlling pain (caused by progression of the disease).
It is important to provide pain medications as the patient's doctor has prescribed. The caregiver
should contact the doctor if the prescribed dose does not seem adequate. With the help of the
health care team, caregivers can also explore methods such as massage and relaxation techniques
to help with pain.
10. Management of psychological changes at the end of life:
Withdrawl:patient near death may seem to be withdrawn from the physical environment
maintaining the ability to hear while not 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 litting go
encourage the family to tell the dying person , its ok to go to be fine
Saying goodbyes : it is important for the patient and family members acknowledge their
sadness , mutually forgive one another ,and say goodbye
Encourage the dying person and family members to verbalize their feelings to of sadness, loss,
forgiveness, to touch, hug cry. Allow the patient and family privacy to express their feelings and
comfort one another. A. management of grief: Express patient to describe loss and their perception of the experience.
Avoid confronting.
Give opportunities to share feelings.
After the patient has passed away, there is no need to hurry with arrangements. Family members
and caregivers may wish to sit with the patient, talk, or pray. When the family is ready, the
following steps can be taken.
Place the body on its back with one pillow under the head. If necessary, caregivers or family
members may wish to put the patient's dentures or other artificial parts in place.
If the patient is in a hospice program, follow the guidelines provided by the program. A
caregiver or family member can request a hospice nurse to verify the patient's death.
Contact the appropriate authorities in accordance with local regulations. If the patient has
requested not to be resuscitated through a Do-Not-Resuscitate (DNR) order or other mechanism.
Contact the patient's doctor and funeral home.
When the patient's family is ready, call other family members, friends, and clergy.
Provide or obtain emotional support for family members and friends to cope with their loss.
12. Care of care gives: Being present during a family members dying process can be highly
stressful, our main role is to
Recognizing signs and behaviors among family members who may be at risk for abnormal
grief reaction , which includes dependency and negative feelings about the dying person
,inability to express feelings , concurrent life crisis, a history of depression, difficult reaction to
previous losses , low self-esteem ,alcoholism , substance abuse .
Family caregivers & other family members need encouragement to continue their usual
activities as much as possible. They need to discuss their activities & maintain some control over
their lives .health care providers need to be sensitive to the importance of significant others who
are not necessarily relatives,. Resources such as community counseling & local support may
assist some people in working through their grief
Family caregivers need to be encouraged to take care of themselves. Keeping a journal can
help the care giver express feelings that may be difficult to express verbally.
Humor is important , and its use from time to time in some situation can provide distraction
and relieve stress filled situation
13. Nursing process:
Pain, chronic related to progress of disease.
Assessment
Nursing
Objective
Subjective data:
diagnosis
Pain, chronic
Patient
related to
verbalizes that
Asses pain
his pain is
progress of
his pain is
thoroughly and
reduced. Patient
data: On
disease. Nausea,
relived Patient
regularly to
observation patient
vomiting related
verbalizes that
determine the
vomiting is
is restless
to complication
he is not
quality, intensity,
stopped and he
Subjective data
of drugs and
having
and location.
is not having
Patient verbalizes
diseases
vomiting
Minimize
nausea sensation
sensation
irritants such as
that , he is feeling
Intervention
Evaluation
Patient said that
vomiting sensation
pressures,
Objective data On
wetness.
observation patient
Provide
is vomiting
divertional
therapy such as
music.
Administer
drug as per order.
Evaluate
effectiveness of
pain relief
measures
frequently.
Asses the
patient for
complaints for
vomiting and
possible causes.
Discuss
modification to
the drug regimen
with health care
provider
Provide
frequent mouth
care.
Offer frequent
meals.
Administer
anti emetics
before meal as
per order