PALLIATIVE CARE

 OVERVIEW OF PALLIATIVE CARE.

 Palliative care is specialized medical care that focuses on providing patients relief from pain and
other symptoms of a serious illness, no matter the diagnosis or stage of disease.
 Is philosophy of and system for delivering care that expands on traditional medical care for
serious ,progressive illness to include a focus on quality of life, function, decision making and
opportunities for personal growth.
 The aim of the palliative care teams is to improve the quality of life for both patients and their
families.
 This form of care is offered alongside curative or other treatments the patient may be receiving.
 It is provided by a team of doctors, nurses and other specially trained personnel.
 These trained personnel work with the patient, his family and the patient’s other doctors will
provide an extra layer of support that compliments his ongoing care.
 Palliative care encompasses the whole self, caring for the physical, emotional and spiritual needs
of patients and their families.It provides relief from pain and other symptoms of illness such as
fatigue, shortness of breath, and loss of apetites
 CONCEPTS OF PALLIATIVE CARE
 Palliative care is specialized medical care for people living with a serious illness, such
as cancer or heart failure.
 Patients in palliative care may receive medical care for their symptoms, or palliative
care, along with treatment intended to cure their serious illness.
 Definition by WHO: Defines palliative care as the active total care of patients whose
disease is not responsive to curative treatment.
 Control of pain, of other symptoms, and of psychological, social and spiritual
problems is paramount.
 Palliative care is not simply a process that a patient undergoes in hospital by
themselves.
 It’s a philosophy that is integrated into their overall care and the care their family
receives.
 PRINCIPLES: Palliative care affirms life and regards dying as a normal process.
Neither hastens nor postpones death. Provides relief from pain and other distressing
symptoms.
 Integrates the psychological and spiritual aspects of care.
 Offers a support system to help patients live as actively as possible until
death.
 Offers a support system to help patient’s families cope during the patient’s
illness and in their own bereavement
 CLINICAL AND PAIN ASSESSMENT
 Precise and systematic pain assessment is required to make the correct
diagnosis and determine the most efficacious treatment plan for patients
presenting with pain.
 The highly subjective nature of pain causes challenges in assessment and management,
however, the patient’s self report is the undisputed standard for assessing the existence
and intensity of pain.
 Therefore, self report is considered the most reliable measure of the existence and
intensity of patient’s pain.
 Many times, accepting and acting on the patient’s report of pain are sometimes
difficult.This is because pain cannot be proved,the healthcare team is vulnerable to
inaccurate or untruthful reports of pain.
  Clinicians can be entitled to their own personal doubts and
opinions,these cannot be allowed to interfere with appropriate patient
care.
 Neverthless, there are some strategies one can use when the patient’s
report of pain is not accepted: (4)
 Acknowledge that everyone is entitled to a personal opinion, but
personal opinion does not form the basis for professional practice.
 Clarify that the sensation of pain is subjective and cannot be proved or
disproved.
 Quote recommendations from clinical practice guidelines, especially
those published by the American Pain Society.
 Also ask “why is it so difficult to believe that this person hurts?
 Pain is not always pathologic as it may serve a protective role.
 Humans evolved the mechanisms to perceive and respond to pain in order
to be aware of and react to injury.
 It is not always correlated with tissue damage and can persist long after the
time of normal tissue healing.
 Definition of pain: Pain is defined as an unpleasant sensory and emotional
experience associated with actual or potential tissue damage, described in
terms of such damage(International Association for the study of pain)
 Is a subjective and unique perceptual experience with multiple dimensions
that may not be directly observed by others or measured by physiological
tests.
 Pain assessment depends significantly on self-report and much effort has
been put forth in evaluating and improving self-report methodology.
 In the USA , hospitals have defined criteria to screen, assess, and reassess
pain that are individualized with the patient’s age, condition, and ability to
comprehend.
 Pain assessment should be ongoing and documented.
 Reassessment is important to guage response and to monitor for side
effects of treatment
 PERFORMING THE COMPREHENSIVE PAIN ASSESSMENT

 A comprehensive pain assessment should be conducted during the

admission assessment or initial interview with the patient, with each new
report of pain, and whenever indicated by changes in the patient’s condition
or treatment plan during the course of care.
 This serves as the foundation for developing and evaluating the
effectiveness of the pain treatment plan.
 Patients should be asked to use some characteristics like; Locations of pain:
Ask the patient to state or point to the areas of pain on the body. Atimes,
you can allow the patients to make some marks on his body is helpful in this
information.
 Intensity: Ask the patient to rate the severity of the pain using a reliable and
valid pain assessment tool.
 There are some common pain rating scales which include:
 Numeric Rating Scale
 Is the most often presented as a horizontal 0-10 point scale, with word anchors of “no
pain” at one end of the scale, moderate pain in the middle of the scale . It may also be
put on a vertical axis, which may be helpful for patients who read from right to left.
 Wong-Baker Faces pain Rating scale: The Faces scale consists of six cartoon faces
with word descriptors, ranging from a smiling face on the left for “no pain or hurt” to
a frowning, tearful face on the right for “worst pain (or hurt)”.
 Patients are asked to choose the face that best reflects their pain. The faces are must
commonly numbered using a 0,2,4,6,8,10 metric, although 0-5 can also be used.
 Patients are asked to choose the face that best describe their pain.
 This can be used in adults and in children as young as 3 years.
 It is important to appreciate that this type of pain scales are self-report tools,
therefore clinicians should not attempt to match a face shown on a scale with the
patient’s facial expression to determine pain intensity.
 Verbal descriptor scale(VDS): A VDS uses different words or phrases to
describe the intensity of pain, such as “no pain, mild pain, moderate pain,
severe pain, very severe pain, and worst possible pain”.
 The patient is asked to choose the phrase that best describe pain
intensity.
 Quality: Ask the patient to describe how the pain feels. Descriptors such
as sharp, shooting, or burning may help identify the presence of
neuropathic pain which is typically confined within the sensory
distribution of the affected nerve or nerves.
 Aggravating and relieving factors: Ask the patient what makes the pain
worse and what makes it better.
 Onset and duration: Ask when the pain started and wether it is constant
or intermittent
 Effect of pain on function and quality of life: The effect of pain on the ability to perform
recovery activities should be regularly evaluated in the patient with acute pain.
 It is particularly important to ask patients with persistent pain about how pain affected
their lives, what could they do before the pain began that they can longer, or what they
would like to do but cannot do because of the pain.
 Comfort-function (pain intensity) goal: For patients with acute pain,identify short-term
functional goals and reinforce to the patient that good pain control will more likely lead
to successful achievement of the goals. For e.g, surgical patients are told that they will
be expected to ambulate or participate in physical therapy postoperatively.
 Patients with chronic pain can be asked to identify their unique functional or quality of
life goals, such as being able to work or walk the dog.
 Success is measured by progress towards meeting those functional goals.
 Other information: The patient culture,past pain expriences, and pertinent medical
history such as cormorbidities, laboratory tests, and diagnostic studies are considered
when establishing a treatment plan.
 TOOLS THAT CAN BE USED FOR PATIENTS
THAT CANNOT SELF-REPORT THEIR PAIN
o FLACC: This is indicated for use in young children.
o Scores are assigned after assessing Facial expression, Leg movement,
Activity, Crying and Consolability, with each of these five categories
assigned scores from 0-2,
o yielding a total composite of score of 0-10, Scores of “0” are interpreted as
reflecting that the patient is relaxed and comfortable,
o scores of “1” to 3 are interpreted as consistent with mild discomfort,
scores from 4 -6 are considered consistent with moderate pain,
o and scores from 7-10 are considered consistent with severe discomfort or
pain.
o PAINAD(Pain Assessment IN Advanced Dementia):This is indicated for use
in adults with advanced dementia who are not able to verbalize their
needs.
o Patterned the FLACC,this tool was developed by the U.S. Department of
veterans Affairs for patients who have dementia.
o CPOT( Critical Care Pain Observation Tool): Is indicated for use in patients
in critical care units who cannot self-report pain, wether or not they may
be inturbated.
o It is also patterned after the FLACC.
 COMMUNICATION WITH PATIENTS AND THEIR FAMILIES (5)

 Efectively discussing palliative care with patients and families requires knowledge
and skill.
 Effective communication ensures better patient care plus builds trust with their
family.
 However, it is a very emotionally charged time for many families of your patients,
especially when an illness is sudden or a patient is reaching the end of their life.
 They may have many questions, concerns and information they want to share with
you.
 It can be fine line that nurses walk when trying to be both considerate of families
concerns while also asserting their expertise.
 This can cause the relationship you have with your patient’s families to not always
be smooth and peaceful.
 But with some know-how you can help to improve patient care as well as build
trust and a connection with your patient’s families.
 LISTEN:Half of communicating effectively is listening.
 Be sure that you employ active listening skills.
 Don’t’ just wait for a family member to finish speaking.
 Be present and fully listen to what they are saying .
 Don’t interrupt and take a moment to understand what your patients loved one is saying.
 LOOK: Be mindful of nonverbal cues. Body language and tone of voice are just as
important as words.
 Not only should you look for nonverbal in your patient’s families, but also be aware of the
nonverbal cues you are sending them.
 Convey genuine interest and concern by making direct eye contact with them as they
speak.
 Making eye contact will also help you to focus on what they are saying. Be sure to use a
tone of voice that convoys both empathy and confidence.
 You want your patients’ families to know that you care, but that your also an expert in
what you are talking about.
 Summarize and Ask : When you have listened to what your patient’s loved ones have
said, repeat it back to them.
 Summarize what they have said in an effective way to show that you understand what
they are saying.
 It also helps you to solidify that information in your memory.
 Be sure to ask follow up questions when needed.
 This also shows that you have been listening to what someone has to say.
 Seeking more information can also help to improve patient care.
 Ensure Patient Privacy: It is critical to remember that there are privacy rules when
communicating health information.
 You need to make sure that you are familiar with HIPPA laws as violating them may
harm patients or lead to a lawsuit.
 Patients generally must consent for their medical information to family members
involved in treatment or payment for treatment, providing that the patient does not
object.
 When in doubt, it’s always best to ask a patient before sharing medical information.
 Be Tactful and Honest: Honesty is always the best policy.
 You never want to lie about a patient’s condition just to ease the worry of
a loved one but always make sure that you are tactful when doing so.
 You may receive reactions of anger or sadness so be prepared to stay
calm.
 You are there to provide care for the patient as well as comfort and
understanding for their family during a difficult time.
 Effective communication with the loved ones of patients can lead to
better care of your patients as well as build trust with the families.
 Due to the difficult nature, it may take time to feel confident in the way
you communicate with patient’s families, but the more experience you
have, the easier it will become.
 BARRIERS TO EFFECTIVE COMMUNICATION
 Not allowing for adequate time with the patient/family.
 Lack of privacy during the meeting due to shared rooms or interruptions.
 Lack of preparation on the part of the treating MD prior to meeting with patient/family or
lack of knowledge of knowledge of the treating MD.
 Discomfort with end of life care on the part of the treating physician.
 Lack of a consensus among involved physicians as to the appropriate treatment plan.
 Presenting options to patients and their families as either aggressive medical treatment
versus no treatment.
 Going into meeting a meeting with your own agenda and not following the patient’s lead.
 Presenting treatment options in a biased manner based on the physician’s own value
system.
 Forgetting that prognostication is dynamic and needs to be revisited with status changes.
 Providing patient with a definitive prognosis of a defined period of time. For e.g, never say
emphatically your mom will die on Wednesday. Not documenting your discussion in the
medical record.
 ETHICAL AND HUMAN RIGHT ISSUES IN END OF LIFE
 Dilemmas that center on death and dying are prevalent in medical- surgical nursing.
 With the availability of increasing sophisticated and advanced technology, it may be
difficult to accept that nothing more can be done to prolong life or that technology may
prolong life but at the expense of the patient’s comfort and quality of life.
 When providing end of life care ,nurses serve as the patient’s advocate and manage pain
and suffering.
 Nurses have the moral obligation to facilitate a patient’s right to self determination.
 Also, nurses should facilitate end of life discussions between the patient and the family in
order to prevent suffering and preserve the patient’s dignity.
 Many people who are terminally ill seek legal options for a peaceful and dignified death.
 Nurses who deliver palliative care must understand that their actions are targeted at
relieving pain and suffering and not hastening death.
 According to the code of ethics of nursing, the nurse should provide interventions to
relieve pain and other symptoms in the dying patient consistent with a palliative care
practice standards and may not act with the sole intent to end life even if the intent to
end life is motivated by compassion or respect for patient autonomy.
• End of life issues shift the focus from curative care to palliative and end of life
care.
• Focusing on the caring as well as the curing role may help nurses deal with
these difficult moral situations.
• Many people at the end of life experience unnecessary difficulty and suffering.
• Patient’s family members, close friends and informal caregivers also experience
a range of problems.
• They play very important roles in the end-of- life care of their loved ones
before, during, and after death.
• After hearing about a terminal diagnosis, the families of dying patients
experience a period of high stress that can be manifested by anger, depression,
interpersonal conflict, and psychosomatic problems.
• Family members are also primer caregivers for dying patient.
• They may feel hopelessness, anger, guilt, and powerlessness when they cannot
relieve the suffering of their terminally ill family member.
• From an ethical perspective, the patient rather the family, proxy or physician
makes decisions best about limiting treatment or treatments that do not provide
cures but prolong life for a while.
• However, if the patient has lost the ability to make decisions, the family, the
proxy health care or the physician must make a decision about the care to be
provided to the patient.
• Family members who feel sadness, fear, anxiety, and are stressed out because a
loved ones is terminally ill will have a hard time to make decisions.
• If they do not know their loved one’s preferences regarding end- of –life care,
they cannot be sure about wether they can give the most appropriate decisions
for the patient.
• This can increase the anxiety and stress of family members. Sometimes family
members may have different preferences regarding the care.
• While some family members clearly and unambivalently want that everything is
done to keep their loved one alive, others are unable to decide to limit treatment
and may want the medical staff to make these decisions for them
• UNIVERSAL ETHICAL PRINCIPLES: They include autonomy, beneficience,
nonmaleficience, and justice.
• These four principles are common in Eastern and Western cultures, but their application
and weight may differ.
• AUTONOMY: Is considered a patient’s right to self-determination.
• Everyone has the right to decide what kind of care they should receive and to have
those decisions respected.
• Respecting patient autonomy is one of the fundamental principles of medical/nursing
ethics. This principle emphasizes physician’s or nurses protection of their patient’s right
to self-determination, even for patients who have lost the ability to make decisions.
• This protection can be achieved by using advance directives.
• These are oral and or written instructions about the future medical care of a patient in
the event he or she becomes unable to communicate, and loses the ability to make
decisions for any reason.
• Advanced directives completed by competent person ordinarily include living wills,
health care proxies, and “do not resuscitate”(DNR) orders.
• A living will is a written document in which a competent person provides instructions regarding
health care preferences, and his or her preferences for medical interventions such as feeding tubes
that can be applied to him or her end- of –life care.
• A patient’s living will take take effect when the patient loses his or her decision-making abilities.
• A health care proxy(also called health care agent or power of attorney for health care) is the
person appointed by the patient to make decisions on the patient’s behalf when he or she loses
the ability to make decision.
• A health care proxy is considered the legal representative of the patient in a situation of severe
medical impairement.
• The responsibility of the healthcare proxy is to decide what the patient would want, not what the
proxy wants.
• Up until 18, the patient’s parents or legal guardians usually serve as their health care proxy.
• After this age, they can legally appoint their own health care proxy.
• The proxies may be one of the family members or friends or another person.
• The proxies make decision about treatments,procedures and life support.
• Even their own wishes are different from the patient, the proxies must into account the patient’s
possible preferences, not their own or anyone else, when making decisions on behalf of the
patient.
• At the end of life, the priority of making decisions belongs to the patient.
• If the patient has lost the ability to make decisions, decisions are made according to the
patient’s AD, if any.
• The proxy health care is second in decision-making on behalf of the patient.
• If no AD or proxy, the decision-making is up to the family member
• If family members avoid making decisions, the healthcare team must make a decision.
• ADs help ensure that patients receive the care they want and guide the patients’ family
members in dealing with the decision-making burden.
• Another reason for ADs is to limit the use expensive, invasive and useless care not
requested by patients.
• In many countries, the right of people to self-determination is a legal guarantee.
• Each patient’s “right to self-determination” requires informed consent in terms of
medical intervention and treatment.
• A patient has the right to demand the termination of treatment(the discontinuation of
life support) and the right to refuse treatment altogether, the exercise of these right is
strictly dependent on the person.
• Beneficence:It requires physicians to defend the most useful intervention for a
given patient.
• Often, patient’s wishes about end of life care are not expressed through ADs,
and the patients’ health care providers and family members may not be aware of
their wishes about end of life care
• If a patient is not capable of decision-making, or if the patient has not previously
documented his or her wishes in the event he or she becomes terminally ill, the
end of life decision is made by the patient’s physician as a result of consultations
with the patient or the patient’s relatives or the patient’s health care proxy.
• In this situation, the responsibility of the physician in the care of the dying
patient should be to advocate the approaches that encourage the delivery of the
best care available to the patient.
• Nonmalficience: Is the principle of refraining from causing unnecessary harm.
This concerns a basic maxim of good care(ie first, do no harm).
• Although some of the medical interventions might cause pain or some harm,
nonmalficience refers to the moral justification behind why the harm is caused.
• Harm can be justified if the benefit of the medical intervention is greater than
the harm to the patient and the environment is not intended to harm the
patient.
• To comply with these principles of beneficience and nonmalficience, healthcare
professionals need to know their roles and responsibilities in end of life.
• The ethical principle of justice is about ensuring a fair distribution of health
resources and requires impartiality in the delivery of health services.
• Medical resources are often limited and should therefore be distributed fairly
and equally.
• There is already a need to evaluate the allocation of advanced medical therapy
to avoid unnecessary use of limited resources.
• Healthcare providers have an ethical obligation to advocate for fair and
appropriate treatment of patients at the end of life. This can be achieved
through good education and knowledge of improved treatment outcomes.
• There are some end-of-life issues that often involve ethical dilemmas these
include; (6)
• pain control
• do not resuscitate orders
• life support measures
• administration of food and fluids
• withholding and withdrawing treatment
• Euthanasia and physician assisted suicide
 GRIEF, MOURNING AND BEREAVEMENT
 A wide range of feelings and behaviors are normal, adaptive, and healthy reactions
to the loss of a loved one.
 The terms grief, bereavement and mourning are often used interchangeably,
however, they have different meanings.
 Grief refers to the personal feelings that accompany an anticipated or actual loss.
 It can equally be said to mean a normal process of reacting to loss.
 Grief can be response to a physical loss, such as a death, or a social loss including a
relationship or job.
 Mourning refers to individual, family,group, and cultural expressions of grief and
associated behaviors.
 Is the process by which people adapt to a loss.
 Bereavement refers to the period of time during which mourning for a loss take
place.
 The time spent in bereavement for the loss of a loved one depends on the
circumstances of the loss and level of attachment to the person who died.
 Both grief reactions and mourning behaviors change over time as people learn to
live with the loss.
 Althuogh the pain of the loss may be tempered by the passage of time, loss is an
ongoing developmental process, and time does not heal the bereaved individual
completely.
 Grief Reactions: Typical grief reactions involve mental, physical, social and or
emotional responses.
 These reactions can include feelings of numbness, anger, guilt, anxiety, sadness
and despair.
 The individual can experience difficulty concentrating, sleep and eating problems,
loss of interest in pleasurable activities, physical problems, and even illness.
 Research has demonstrated that the immune systems of individuals grieving is
suppressed and their heathy cells behave more sluggishly, resulting in greater
susceptibility to illnesses.
 Symptoms usually diminish within 6-10weeks.
 TYPES OF GRIEF
 Complicated Grief:After the loss of a loved one,
 some individuals experience complicated grief,
 which includes atypical grief reactions
 Symptoms include; Feelings of disbelief, a preoccupation with the dead loved
one, distressful memories, feeling unable to move on with one’s life, and a
yearning for the deceased.
 These symptoms can last for six months or longer.
 Disenfranchised Grief: It refers to grief that is not socially recognosed.
 Examples of disenfranchised grief include death due to AIDS, the suicide of a
loved one, perinatal deaths, abortions, the death of a pet, lover, or ex- spouse,
and psychological losses, such as a partner developing Alzheimer’s disease.
 Due to the type of loss, there is no formal mourning practices or recognition
by others that would comfort the grieving individual.
 Anticipatory Grief: Is grief that occurs when a death is expected and
survivors have time to prepare to some extent before the loss.
 A death after a long-time, painful illness may bring family members a
sense of relief that the suffering is over, and the exhausting process of
caring for someone who is ill is also completed.
 Models of Grief:There are several theoretical models of grief, however,
none is all encompassing.
 These models are just guidelines for what an individual may experience
while grieving.
 However, if individuals do not fit a model, it does not mean there is
something wrong with the way they experience grief.
 It is important to remember that there is no one way to grieve, and
people move through a variety of stages of grief in various ways.
 STAGES OF GRIEF (5)
 These stages described stages of loss experienced by someone who faces the news of their
impending death.
 They are not really stages that a person goes through in order or only once, nor are they
stages that occur with the same intensity.
 The process of death is influenced by person’s life expriences, the timing of their death in
relation to life events, the predictability of their death based on health or illness, their belief
system, and their assessment of the quality of their own life
 But these stages help us to understand and recognize some of what a dying person
expriences psychologically, and by understanding,we will be more equipped to support that
person as they die.
 DENIAL:This cannot be true reaction.
 This is often the first reaction to overwhelming, unimaginable news.
 Denial or disbelief or shock, protects us by allowing such news to enter slowly and to give
us time to grips with what is taking place. The person who receives positive test results for
life-threatening conditions may question the results, seek second opinions, or may simple
feel a sense of disbelief psychologically even though they know that the results are true.
 STAGES OF GRIEF CONTD
 ANGER: Why me?, it also provides us with protection in that being angry energizes us
to fight against something and gives structure to a situation that may be thrusting us
into the unknown.
 It is much easier to be angry than to be sad, in pain, or depressed. It helps us to
temporarily believe that we have a sense of control over our future and to feel that
we have at least expressed our rage about how unfair life can be.
 Anger can be focused on a person, a health care provider, at God, or at the world in
general.
 It can be expressed over issues that have nothing to do with our death,consequently
being in this stage of loss always obvious.
 BARGAINING: It involves trying to think of what could be done to turn the situation
around.
 Living better, devoting self to a cause, being a better friend, parent, or spouse, are all
agreements one might willingly commit to if doing so would lengthen life.
 Asking to just live long enough to witness a family event or finish a task are examples
of bargaining.
 DEPRESSION or Sadness is appropriate for such an event. Feeling the full weight
of loss, crying, and losing interest in the outside world is an important part of
the process of dying.
 This depression makes others feel very uncomfortable and family members may
try to console their loved one.
 Sometimes hospice care may include the use of antidepressants to reduce
depression during this stage.
 ACCEPTANCE: This involves learning how to carry on to incorporate this aspect
of the life span into daily existence.
 Reaching acceptance does not in any way imply that people who are dying are
happy about it or content with it.
 It means that they are facing it and continuing to make arrangements and to say
what they wish to say to others.
 Some terminally ill people find that they live life more fully than ever before
after they come to this stage.
 MANAGEMENT (7)
 Coping with death is vital to your mental health.
 It is only natural to experience grief when loved one dies.
 The best thing you can do is allow yourself to grieve.
 In reality, the work of grief and mourning takes time , and avoiding grief work after the death
often leads to long-term adjustment difficulties.
 Mourning for a loss involves the undoing of psychosocial ties that bind mourners to the
deceased, personal adaptation to the loss, and learning to live in the world without the
deceased.
 There are many ways to effectively cope with your pain:
 Seek out caring people:Find relatives and friends who can understand your feelings of loss.
Join support groups with others who are experiencing similar losses.
 Express your feelings: Tell others how you are feeling,it will help you to work through the
grieving process.
 Take care of your health: Maintain regular contact with your family physician and be sure to
eat well and get plenty of rest. Beware of the danger of developing a dependence on
medication or alcohol to deal with your grief.
 MANAGEMENT CONTD
 Accept that life is for the living:It takes effort to begin to live again in the
present and not dwell on the past.
 Postpone major life changes. Try to hold off on making any changes, such
as moving, remarrying, changing jobs or having another child. You should
give yourself time to adjust to your loss.
 Be patient: It can take months or even years to absorb a major loss and
accept your changed life.
 Seek outside help when necessary: If your grief seems like it is too much
to bear, seek professional assistance to help work through your grief. It is a
sign of strength, not weakness, to seek help.
 NURSING INTERVENTION FOR GRIEF AND MOURNING
 Support the Expression of feelings:
 Encourage the telling of the story using open-ended statements or questions( e.g, “Tell me about
your husband”).
 Assit the mourner to find an outlet for their feelings: talking, attending a support group, keeping a
journal,finding a safe outlet for angry feelings (writing letters that will not be mailed, physical activity).
 Assess emotional affect and reinforce the normalcy of feelings.
 Assess for guilt and regrets: “Are you especially troubled by a certain memory or thought?”. How do
you manage those memories?”.
 Assess of the presence of Social Support. Do you have someone to whom you can talk about your
husband?”. “May I help you find someone you can talk to?”
 Assess Coping Skills. “How are you managing day to day?” Have you experienced other losses? How
do you manage it?. “Are there things that you are having trouble doing?”” Do you have/need help
with specific tasks?”
 Assess for Signs of Complicated Grief and Mourning and Offer Proffessional Referal. Are you
preoccupied with toughts of the deceased that interfere with your ability to care for yourself? Do you
have frequent and prolonged intense emotional pain?
 NURSING CARE AT END OF LIFE

Throughout history, nurses have sought ways to improve quality of life for
individuals, families, and communities during every phase of life's journey.
• Advocacy is a common thread of quality end-of-life (EOL) nursing care,
encompassing pain and symptom management, ethical decisionmaking,
competent culturally sensitive care, and assistance through the death and dying
process.
• The foundation of advocacy is the nurse-patient relationship. Advocacy has 2
parts: information and support.
• The nurse experiences the patient as uniquely human, with individual strengths
and beliefs, and uses this understanding to intervene on the patient's behalf.
• Patients exhibit the following traits when in need of advocacy: powerlessness,
helplessness, dependency, vulnerability, inability to speak, and loss of self-
control.
• During end- of- life care, the nursing care planning revolves around controlling pain,
preventing or managing complications, maintaining quality of life as possible, and
planning in place to meet patient’s and / or family’s last wishes.
• The nurse’s primary responsibility is to the patient and making sure their wishes are
honoured.
• Even though these wishes aren’t always in accordance with the family’s wishes. Nurses
must maintain a focus on the patient’s preference and respecting their autonomy while
at the same time supporting the family as they navigate a process they’ve likely never
been through before.
• Nurses must be skilled in pain management to ensure their patients remain as
comfortable as possible.
• In addition to disease management, they must also attend to the psychological,
interpersonal and spiritual needs of the patient as well.
• Not only only do they manage pain and other symptoms, they assist in the process of
death with diginity,because each patient and family both have a unique perspective
concerning end- of –life, therefore it is the role of the nurse(Hospice) to make cultural
assessment and adjust care accordingly.
• Dying is a process.
• It involves the ceasation of physical, psychological, social and spiritual life here on earth.
• Dying is an individualized experience and each person dies in their own way and time.
• Patients who know that they are dying will usually make their wishes known about where
they want to spend their final days and hours.
• Therefore, it is vital that the nurse involved in that patient’s care advocate for the patient’s
wishes for their end of life.
• As nurses, we cannot with hundred percent certainty ensure that each of our patient’s
dying process will go smoothly without any problems.
• An intervention that works well for one person dying of cancer may not work for another.
• What we can do is to be armed with the best knowledge about management of symptoms
during dying process.
• One of the best things we can do for patients who are dying is to provide the best possible
care for them and their families during this period.
• This is particularly important during the “imminent” phase. This is the phase that proceeds
the actual death, and is also the time when the patient typically losses consciousness.
• Here, it is vital that the nurse performs; thorough assessments, rapid response to changes in
status, rapid titration of medications and timely discontinuation and introduction of
interventions aimed to promote comfort.
• PHASES OF DYING (ATI): Actively Dying; There are two typical roads to death that can occur
during the actively dying process;
• the usual road or the difficult road. The usual road is the best we can hope for when caring
for persons at end of life care.
• This begins with sedation and lethargy and progress to a comatose state and thgen death.
• The difficult road includes restlessness and confussion that often progresses to unpleasant
hallucinations and delirium.
• Myoclnus and seizures can also accompany the difficult road.
• Physical signs and symptoms associated with this phase are; pain, dyspnea, fatigue, cough,
bowel changes, incontinence, anorexia/cachexia, nausea& vomiting, depression/anxiety and
seizures.
• The role of the nurse during this phase is to support the patient and family by educating
them on what they might expect to happen during this time, addressing their questions and
concerns honestly, being an active listener, and providing emotional support and guidance.
 PHASES OF DYING AND MANAGEMENT
CONTD.
• Transitioning: This a term used by clinicians to describe the period of time in between the
actively dying phase and the imminent phase.
• Here , patients begin to withdraw from the physical world around them in preparation for their
final journey.
• Some examples include decreased interest in activities of life, less frequent and shorter
interactions with others, and acknowledgement of the presence of people and things that are
not visible by clinicians and caregivers.
• This is referred to as “nearing death awareness” and often documented by clinicians as
hallucinations.
• Patient’s will not generally exhibit any signs or symptoms of distress with this awrreness,
whereas patients whose dying is taking difficult road might show signs of distress or agitation
with their awareness.
• During this phase, it is important to keep the patient’s area as comfortable and peaceful as
possible.
• Common lights and noises can contribute to restlessness and agitation, therefore it is advisable
to keep lights soft, shades closed if possible, and external noises limited to a minimum.
• Imminent:This term is defined as about to happen, forthcoming or near.
• The patient has transitioned into this last phase and death can occur at any point
• Not all individuals will present with every sign or symptom, and the symptoms will occur in no particular order.
• During this phase, the body is in the process of shutting down.
• Multi-system organ failure often occurs and will result in some typical symptoms like; cool and clammy skin,Mottled
extremities, Rapid or irregular pulse, Inability to ambulate, Inability to move/ turn in bed, Increased lethargy, etc.
• Here, the change of care focus as becomes imminent. The assessment of vital signs will cease unless requested by
the family, at which point the nurse would gently explain the overall rationale for measuring vital signs and wether
this will provide any benefit for the patient.
• Out of all the stages of the dying process, this last phase is the one in which impending death becomes a reality for
everyone involved.
• During this phase, the patient becomes unresponsive to those around them and may appear be sleeping.The nurse
should support the patient and family,reserve judgement and not make assumptions about the reason’s behind the
family’s behavior.
• The nurse’s role is to provide comfort and quality for the patient and empathetic support to the family.
• There are several nursing interventions and activities for the nurse to perform during this phase.

• Most of which related to communication, coordination and continual assessment and response to changes in
patient’s status. Inform the family if death is imminent,do so in a sensitive and calm manner. Here, also some family
may want clergy, sacrements or special blessing. The nurse can assist them to obtain these.
• The Death: There are two ways that can be classified;
• clinical and biological death.
• Clinical death comes first and is when a person,s heart stops beating.
• Circulation of the blood and respiration also stops once there is cessation of heart beat.
• It is during this time that individuals can be revived by way of CPR.
• Oxygen can be given, the blood can be kept circulated and the heart beat can be potentially restored.
• Without CPR, in approximately4-6 mins after clinical death, brain cells will begin to die of lack of oxygen.
• This is called biological death and is called the point of no return.
• Several hours after biological death occurs, rigor motis occurs. Here, the nurse will assess for signs of life,
including heartbeat, respiration and pupils status by checking the patient’s pupils with a light for fixation and
dilation.
• Cover the patient with a light sheet up to below the shoulders.
• The nurse should offer her condolences to the family members and extend assistance with contacting any
other family members.
• Notify the physician. Ask the patient wether to remove any tubes in situ, wether they will like to assist to
bath/ prepare him to the funeral home.
• Assist them to remove any jewelry other items from the patient.
• Be sure to maintain the highest diginity and respect for the decease through this post-mortem care.
 PAIN MANAGEMENT
 Everyone’s experience of pain is different.
 Some people will feel worried and distressed by the idea of experiencing pain at the end of their life.
 There are painkillers and non-drug( non-pharmacological techniques available to treat pain and most
patient’s pain can be managed well.
 While pain is common in people living with a terminal illness, some patients won’t have any pain at
all.
 CAUSES OF PAIN: Pain in terminal illness can be caused by ;
 the illness itself.
 Treatments like operations.
 Side effects of treatments like constipation.
 Other illnesses the patient may have had for a while, like arthritis.
 Pain is a sensory, subjective and emotional experience;
 pain is what the patient says it is. It’s important to acknowledge the person’s pain and not dismiss
how they say they are feeling.
 You should be honest with the patient. Don’t promise to get rid of their pain; instead, reassure them
that you will do your best to help them manage it.
 Pain can be physical, psychological, or a combination of both.
 Psychological pain may be emotional or spiritual.
 Sometimes psychological pain increases physical pain and this is often known as “total
pain”. This does not mean that pain is all in the mind, rather that psychological factors
can make it much harder to deal with.
 Sometimes, a patient’s physical pain may not improve until psychological issues are
addressed. For example, they may feel distressed, anxious or isolated.
 ASSESSING PAIN: Carrying out regular pain assessments can help you to know how the
pain changes over time, and how it responds to different painkillers.
 This may also help other professionals involved in their care. Asking these questions
should help you gain a better understanding of the patient’s pain;
 where is the pain? Is there more than one area of pain?;
 Can you describe the pain? For e.g, is it an ache or a sharp, stabbing pain?
 On a scale of 10, how bad is the pain?, How long have you had it?
 When did it start?, How long does it last for?, Is it new or have you had it before?
 What makes the pain better or worse?, Did it start gradually or come on quickly?,
 Does it start in one place and move to somewhere else?, Do you have any other symptoms like
vomiting, finding it hard to look at light, needing to empty your bowels, or breathlessness?
 Are you having any homeopathic treatment? How is it affecting your daily activities?.
 Patients can equally be assessed in non- communicative ways.
 MANAGING PAIN: There are different painkillers( anagelsics) and non-drug techniques available and
most patients’ pain can be managed well.
 Many patients concerns and address their worries about painkillers together.
 Listen to your patient’s concerns and address their worries.
 Common worries about painkillers include; (5)
 side effects,
 addiction,
 worrying that needing painkillers means the illness is progressing or that they will die soon,
 worrying that taking painkillers now means that they won’t work when the pain gets worse, belief
that pain is an inevitable part of illness and needs to be endured,
 worrying that painkillers will make death come more quickly.
 PAINKILLERS: Prescribers should start at the appropriate level of painkillers for the patient’s pain by
following the WHO’s analgesic ladder.
 There are 3 main types of pain killers;
 Simple painkillers for mild pain like- like paracetamol,asprine and ibuprofen.
 Weak opiods for moderate pain – like codeine and tramadol.
 Strong opiods for severe pain- like morphine, oxycodone, buprenorphine and fentanyl.
 Because different things can cause physical pain, a combination of different types of pain
killers can be used.
 Atimes, a period of trial and error before finding the right painkillers for the patient. They
can be reassured during this time.
 OPIODS: They are similar to morphine. They work for most but not all types of pain.
 It has some side effect like constipation, nausea and vomiting, sedation. It’s overdose can
cause extreme drowsiness, difficult breathing, delirium, jerking movements.
 NON-OPIOD PAINKILLERS: Other drugs can be used when opiods are not appropriate.
 These drugs are; antidepressants for nerve pain,
 anticonvulsants(anti-seizure) for nerve pain, antispasmodic such as hyoscine butylbromide
for crampy pain(colic),
 steroids which reduce inflammation, bisphosphonates for bone pain.
 ADMINISTERING PAINKILLERS:There are several ways to give painkillers;
 oral, using tablets, dispersible tablets or syrups, sublingual, buccal, transdermal patch( slow release patch on
the skin), subcutaneous injection, syringe pumps, for continual infusion of medication.
 With the right treatment, most patients’ pain can be managed well. If the patient is in pain, despite
treatment, let their doctor or specialist know so they can change the dose or add new treatments.
 MANAGING BREAKTHROUGH PAIN:Sometimes a patient’s pain may increase, even though it is already being
managed with painkillers.
 This happens when the pain becomes stronger than the pain control the patient is on. This is known as
breakthrough pain.
 This type of pain can be brought on by moving, sneezing or coughing. Or it may happen when the dose of a
long- acting painkiller starts to wear off.
 Appropriate pain drugs can be prescribed as required (PRN).
 Drugs like Oramorph liquid, Sevredol tablets, Oxycodone capsules and liquid are fast acting opiods that are
often used to breakthrough pain.
 They treat pain quickly and their effectwill usually last for 4-6 hours. They can be used on top of the person,s
regular long- acting medication.
 Contact the patient’s GP or nurse prescriber if nothing has been prescribed to help with breakthrough pain.
 NON-DRUG( NON- PHARMACOLOGICAL) TECHNIQUES. (7)
 TENS:(transcutaneous electrical nerve stimulation): machines are attached
to the body with electrodes placed wherever the pain is felt.
 They deliver gaentle electric pulsing to the area, which can ease pain.
 ACUPUNCTURE: Is sometimes effective in treting chronic pain. It may be
available at the patient’s local hospice, hospital, GP practice, or a private
practicioner.
 HEAT AND COLD:Hot water bottles and warm baths can ease pain. Using an
ice pack on painful areas of the body might help too.
 COMPLEMENTARY THERAPY: These can help someone to relax,which can
reduce pain. Common therapies include; mindfulness, meditation,
massage, aromatherapy, reflxoology, hypnotherapy, and reiki.
 OCCUPATIONAL THERAPY AND PHYSIOTHERAPY: Occupational therapists
and physiotherapists can make adjustments to the patient’s home and daily
activities to manage pain.
 They can recommend mobility aids to make moving around less painfull.
 Changing positions regularly or using special cushions can help ease pain in
particular areas too.
 TALKING THERAPY: An important part of treating physical pain is to address
any psychological factors that may be impacting the patient’s experience of
pain.
 Active listening and acknowledging and addressing any worries or concerns
can be very helpful.The patient may benefit from sessions with counsellor,
psychotherapist, spiritual advisor or faith leader.
 DISTRACTION: Playing music, reading a book out loud or looking at photos
can be relaxing and help to distract the patient from their pain. Help the
patient to do activities that are meaningful to them, such as seeing friends.
 MANAGEMENT OF SYMPTOMS OTHER THAN PAIN
 Symptoms management requires an understanding of the likely cause of the
symptom in the individual patient, comprehensive assessment, and
evidence-based interventions.
 Apart from pain, there are other common symptoms at end of life which
include; constipation, nausea, breathlessness, fatigue and delirium.
 Relieving these symptoms is a key aim of palliative care.
 CONSTIPATION:Constipation occurs when a person does not open their
bowels for several days longer than the usual time for this person.
 This symptom can cause nausea, pain and tiredness.
 Constipation can occur due to decreased fluid intake, limited mobility,poor
diet or the person’s illness.
 It can also be a side effect of medication or some treatments.
 In most cases, this can be prevented.
 Preventing constipation:Drink plenty of fluids such as water and juice.
 Eat foods high in fibre.
 Have a short walk each day, if they feel up to it.
 Ask their doctor to prescribe a laxative if they have been prescribed strong pain
medicines( such as morphine).
 TREATING CONSTIPATION:There are many natural and over- the –counter remedies
for constipation that can be used in conjunction with prescribed medicines.
 Dietary changes, such as increasing the amount of fibre in the diet.
 More fluids- liquids help to plump out feaces, however, it is important to restrict
the intake of diuretic drinks such as tea, coffee and alcohol.
 Fibre supplements- these may be helpful if the person is reluctant or unable to
include include more wholegrain foods, fresh fruits or vegetables in their daily diet.
 Exercise- if able- one of the many benefits of regular exercise is improved bowel
motility. Removal of the impacted faeces which may involve enemas, stool softener
and a short-term course of laxatives.
 NAUSEA:This is when a person to vomit or just feels sick.
 The cause of nausea can be related to the disease, medications, chemotherapy, radiotherapy,
constipation or an imbalance of chemicals within the body.
 Ensure a bowl or bucket is within reach in case they vomit.
 Ask how they rate the nausea on a scale from 1-5( 1 being ‘very little’ nausea and 5 being ‘extreme’
nausea) If anti-nausea drugs have been prescribed, check to see if the y have been taken as
directed.
 If the prescription allows, give the anti-nausea medication-unless the thought of trying to take a
tablet makes the patient feel worse.
 If the patient prefers, do not give them anything to eat or drink until the nausea passes.
 Alternatively, they may find that small amounts of food or drinks help them feel better.
 Ask when was the last time they had a good bowel motion. If it is longer than two days ago, follow
the treating constipation directions.
 Encourage him to rest. Suggest deep breathing.
 Play some soft music. Offer a foot or neck massage.
 If he feels up to it, a bath or shower may help.
 ss If nausea is not relieved after one hour or if gets worse, contact the palliative care team.