Lesson 4: Understanding Palliative Care • Hospice at home means that they don’t have

PALLIATIVE CARE AND ITS KIND to adapt to a new environment . They can
receive the specialist medical support and
• The types of palliative care available , whether personal care around the people and
you’re seeking end of life care for a loved possessions that matter most to them.
one, or you’re managing an end of life care case, • It’s important to remember that homes aren’t
there are a number of options available. just buildings – they’re the locations with which
• There are four main options available to people many good memories can be associated. To
looking for end of life care. have these reminders around during a difficult
1. Palliative care in hospitals time can be a great comfort.
2. Residential palliative nursing in a care home or • With hospice at home, provided by a live-in
hospice carer, your loved one can experience as little
3. Day care at a hospice disruption to what they’re used to as
4. Palliative home care possible, allowing family and friends to visit
on a more frequent basis.
• With all of these forms of care, the individual will • Person-centered
receive pain and symptom management, and  It’s centered entirely on the needs of the
emotional support. The environments differ quite person – exactly as with live-in care. This means
significantly, however. that the individual needs of your loved one are all
1. Hospital palliative nursing- It’s a form of that matter. And everything is done to ensure that
palliative care that’s often delivered over a short- they’re comfortable – be it through the presence
term period and by specialist care teams or a of a companion or through medical support,
single nurse-depending on the case where necessary. End of life care – in the
– depending on the case. Palliative care teams in environment they know best.
hospitals will monitor discharge plans and arrange • Companionship
for individuals to be transferred to receive palliative  Although carers are responsible for
care in hospices, care homes or in their own home. delivering medical support, they’re also
2. Palliative care in a care home- For those who companions – someone new for your loved one
already live in a care home, remaining there to to talk to, get to know and partake in activities
receive end of life care is a more comfortable with.
option than having to move to a hospital ward. It’s  The period leading up to the end of life doesn’t
widely considered to be a calmer environment in have to mark an end to hobbies, interests and
which to receive the medical support required. Not enjoyment. As such, lots of end of life care
all residential care homes can provide palliative providers will look at the interests of individuals
care, though as well as their medical needs when assessing
– only those with specially trained staff. suitable carers.
3. Hospice day care-Hospices are similar to • Consistency
residential care homes in some ways. They deliver  In any form of care, whether live-in care or end
palliative nursing and rehabilitation, but people of life care – consistency is important.
don’t have to reside there permanently  Palliative care at home ensures that this
– they can attend for the day then return home. consistency is maintained. It’s usually provided
4. Palliative care at home- Palliative home care by one or two carers, which ensures, again, that
enables individuals to remain in their own homes to disruption to routines is kept to a minimal level.
receive end of life care. Carers, specially trained in  It means that your loved one doesn’t have to
palliative nursing, will move into the home of the get used to being around multiple carers. It’s also
person they’re responsible for looking after to provided within the environment an individual
provide round-the-clock support. In some knows better than any other.
instances, it’s also referred to as hospice at home. • Complex conditions
 Many palliative carers can assist with a range
THE BENEFITS OF PALLIATIVE CARE AT of complex conditions, in addition to providing the
HOME home help and personal care synonymous with
• The National Bereavement Survey (VOICES) – a live-in care
study designed to assess the quality of end of life  Reputable end of life care providers like
care – found that of the respondents that expressed Helping Hands can provide carers who are
a preference, 81% stated they preferred to die in trained in ventilator, continence, gastric care,
their own home. including PEG feeding, help with medication and
• And there are a number of benefits to choosing an much more.
in- home end of life care service.
• Hospice at home End of life care provided in the Lesson 5: Identifying Nurses Role as health
home is sometimes also known as hospice at care provider in hospice facility
home. With it the level of skill and support of
palliative care provided within a hospice are taken ROLE OF NURSE IN PALLIATIVE CARE
and replicated within the home environment.
1. Caring For The Patient:
• Direct nursing care 6. Maintain A Comfortable And Peaceful
• Meeting physical needs & symptoms Environment
management. • It helps to relax, promote good sleep patterns
• Providing psychological reassurances and minimize symptoms severity.
• Monitoring & administering pain relief intervention,
both pharmacological and nonpharmacological. 7. Promote Spiritual Comfort And Hope
• Preventing complications: preventing, monitoring • Helps the client to make connections to their
& relieving discomfort relaxation & contentment & spiritual practice or cultural community.
preventing complication. • Collaborates with the client own spiritual
• Educating family in basic nursing care. leaders and community.
• Facilitating participation of significant others in • Demonstrate patience.
patient care.
• Specialized nursing care related to: 8. Protect Against Abandoment And Isolation
• Lymph edema management • Answer promptly, if they have doubts.
1. wound care • Involving the family members in clients care.
2. stoma care
3. bowel and bladder care. 9. Support The Grieving Family
Palliative care plan includes • Provide education and information
• care goals • Inform family members are able to get way to
• symptom management rest and relax.
• advance care planning • Provide psychological support
• financial planning 10. Assist With End Of Life Decision Making
• family support 11. Facilitate Mouring
• spiritual care • Help them to accept the loss
• functional status support and rehabilitation • Support efforts to adjust to the loss
• co morbid disease management • Encourage establishment of new relationship
• Allow to grieve
2. Use Therapeutic Communication: • Interpret normal behavior
• Establish caring and trusting relationship • Provide continuous support
• Assess the stage, types of the grief, and its signs • Be alert for ineffective coping.
and symptoms.
• Provide reassurance and respect PALLIATIVE CARE COMPETENCIES / SKILLS
• Invite the clients to reveal the emotions & • Communication skills
consensus of greatest importance to them. The ability:
• Avoid communication barrier. 1. To field and respond to sometimes profound
or rhetorical questions about life and death
3. Provide Psychosocial Care: 2. To know when to say nothing, because that
• They may have anxiety, depression, altered body is the most appropriate response.
image, powerlessness, uncertainty and isolation. 3. To use therapeutic comforting touch with
• Provide information that help the client to confidence.
understand their disease, the benefits and burden 4. To challenge colleagues who may wish to
of treatment options, and their values and goals to deny patients information; and, perhaps
preserve the autonomy of client 5. To discuss the imminent death of a relative
with families
4. Manage The Symptoms: • Physical skills
• Managing the multiple symptoms commonly 1. The knowledge and skills necessary to
experienced by the chronically ill or dying clients deliver active, hands-on care in whatever
remains a primary goal of palliative care nursing. setting throughout a long period of illness.
• Ongoing clinical assessment, reassessing pain 2. Observational skills and the intuitive ability to
and medication side effects, developing pain recognise signs
management expertise and advocating for change 3. Advising doctors of the appropriate
if the client does not get relief from the prescribed prescription and dosage to manage pain4. The
regimen. advocacy role nurses have toward patients at a
time of extreme vulnerability
5. Able To Understand The Personal Need Of • Psychosocial skills
The Patient: An ability:
• Personal hygiene and protection from infections 1. Work with families,
are two major needs of cancer patients. 2. Anticipating their needs,
• Prevention of pressure sore 3. Putting them in touch with services and
• Nutritional need – consider the taste and desire to 4. Supporting them when appropriate
have specific food in consideration. • Teamwork skills
• Catheter care
• Turning patient position frequently
 1. The growth of the nursing role within these • Support patient, family, therapists and
teams has been dramatic and continues to colleagues.
represent a much-admired model of working. • Contact with other staff members providers
• Intrapersonal skills power to the patient
1. Nurses need to recognise and attempt to • Improved communication inter- personal
understand personal reactions that occur as a
natural consequence of working with dying and ESSENTIAL BEHAVIORS OF THE NURSE IN
bereaved people and to be able to reflect on how PALLIATIVE CARE
this affects care given in sensitive situations. • To enable convenience
2. It is the most challenging of all competency • Respond to anger.
areas and plays a significant part in the • Respond to colleagues
professional growth of those who choose to work • Improve quality of life until death
in this field. • Respond to family
• Life closure skills • Be when the death occur
1. This area is concerned with nursing behaviours
and skills that are crucial to patients ‘and families;
THE SKILLS NEED BY A PALLIATIVE CARE
dignity, as they perceive it, when life is close to
NURSE
an end and thereafter. • A committed person- A Nurse stays with the
2. Such care has been described as a sacred patient or visits the patients many times during
work, in which the nurse enters into the patient ‘s
the course of the patients illness. She may have
intimate space and touches parts of the body that
to stay with her patient for a long time if it makes
are usually private the patient as ease. She may have to become a
person oriented nurse in order to give holistic
PALLIATIVE CARE NURSING IS care.
• Connecting • A good listener- Verbal expressions are
1. Making a connection always heard. Body language tells many things.
- Establishing a rapport Activities like sitting alone in an area of
- Building up trust significance or using articles of a particular
2. Maintaining a connection person who passed away tells us that area or the
- Being available, spending time, sharing secrets, use of that specific article gives him comfort
sharing self, maintaining trust. and he is preparing himself for leaving this world.
3. Breaking the connection Nurse allow them to ventilate their anxiety for
- Usually as a result of the patient‘s death coping with the present situation.
• Empowering • A good communicator- A nurse needs to be
1. Facilitating honest with the patient about the disease.
- Recognises patient autonomy She needs to answer in simple ways so that the
2. Encouraging patient and the relatives can understand. Your
3. Defusing patient may need an extra minute or a comforting
- Dealing with negative feelings word from you which makes a difference. She
4. Mending needs to use right word, in right tome and pitch
- facilitating healing with the right attitude for reaching out to the
5. Giving information patient effectively. Acute care nurse plays a
• Doing for pivotal role in clinician - significant others,
1. Taking charge communication in the acute are settings.
- Symptom control • Empathetic to the emotions (of patients and
- Making arrangements relatives)- Patient and relatives may shout and
2. Team playing scream at you. They may blame God for pain and
- Acting as the all difficulties. Palliative care is seen as the end of
- Patient‘s advocate the road of care. Reacting to their anticipated
• Finding meaning grief and crisis and helping them appropriately
1. Focusing on living makes to be at ease. Families and the patient
- helping the patient to live as fully as possible needs to know the truth as they may need to
2. Acknowledging death reorganize and adopt their lives towards the
- Giving or reiterating bad news attainment of more achievable goals, realistic
- Talking about death and the time left hopes and aspirations. Nurses role was a
• Preserving Integrity supportive one with multiple dimensions. Model
1. Confronting own mortality of the supportive role in palliative care was
2. Burnout developed , comprised of six intervoven
3. Supporting Colleagues dimensions. Valuing, connecting, empowering,
doing for, finding meaning and preserving own
STANDARDS OF CARE integrity
• Relief of symptoms • Able to understand the pain- Pain is what the
• Patient independence and patient says hurts. The intensity of pain increases
• Open dialogue. or decreases according to the mood of the
patient. It could be acute or chronic. Causes of pain  Lack of appropriate information & resources
can be due to chemotherapy, constipation,  Lack of investment in research pertaining to
radiation therapy, physical or psychological palliative & end of life care.
problems. Pain management in patient includes  There are over 135 hospice and palliative care
modifications of the services in 16 states in India, concentrated in
pathological process by giving radiation therapy, large cities.
chemotherapy or surgery. Along with opioids and  There are 19 states or Union territories in
non-opioids are also used. Adjuvant includes which
corticosteroids, antidepressants, antiepileptic us, no palliative care provision was identified.
muscle relaxants antispasmodics and biphos  Barriers to the development of palliative care
phonates. Nurse teach the patient about non drug include – poverty, population density, geographic
methods include: massage, application of heat distances, opioid availability, work force
pads, acupuncture, relaxation therapy, behavioral development and limited national palliative care
therapy can be used to reduce the pain. policy.
• Able to recognize associated neuropsychiatry
conditions- Cancer related fatigue, and sleep MYTHS ABOUT PALLIATIVE CARE
disturbances must be considered as a clinical  Residents will become addicted to pain relief
syndrome. Cancer patient with advance disease drugs.
may prone to delirium, depression, suicidal  The palliative approach is only provided in
ideation, and severe anxiety. People who receives hospital type settings
systematic cancer treatment were somewhat
 You need to be an expert to be able to provide
impaired in executive function, verbal memory and
the care
motor functioning.one third of cancer population
 You need to be a nurse to be able to provide
experiences some variety of distress , only about
10% receives any psychosocial therapy. the care
 Applying the palliative approach will increase
the care worker ‘s workload
Lesson 6: Issues and Trends in Hospice
Palliative Care  The palliative approach is only provided to
residents with cancer
BARRIERS TO PALLIATIVE CARE  The palliative approach costs more.
There are 3 main categories of obstacles for
patients to receive palliative care: APPROACHES TO PALLIATIVE CARE
 Family members creating obstacles  Not a ―one size fits all approach
1. Lack of openness of communication between  Care is tailored to help the specific needs of
family members and patient and between family the patient
members and health care team.  Since palliative care is utilized to help with
2. Forbid the health care team to discuss the various diseases, the care provided must fit the
patient’s diagnosis and prognosis with the patient. symptoms.
3. Demand complete control over the patient’s
goals of care. ETHICAL PRINCIPLES
4. Want to continue treatment that is futile to the • Respect for autonomy – to respect the
patient. autonomy of individual.
6. Limit medications or care delivered to the patient. 1. Respect for autonomy has limitations.
 Health professionals creating obstacles 2. Must be compatible with the autonomy of all
1. Double Effect those affected
2. Active Euthanasia 4. Obligation in the clinical setting to provide
3. Own Fear of Dying information to allow patients to make informed
4. Medicare Laws autonomous decisions
5. Opioid Prescribing Laws 5. Major challenge in patients incapacitated by
6. Lack of Knowledge about Palliative Care serious illness.
 Conflict between ideal care and patient’s 6. Symptom management may compromise
wishes autonomy whilst being of benefit.
1. Patient may want to stay at home, even when • Beneficence – to do good.
symptoms are too great to be treated at home. 1. Duty to act in the patients best interests
2. Fear of hospitalization 2. Very pertinent in end of life care
3. Wish to maintain their autonomy 3. Can withdrawal/withholding of treatment be in
4. Loss of control a patients best interests?
4. Balance of burdens vs benefits.
 Inadequate training of health care personnel
5. Very important to assess risk of side effects in
in symptom management & other End of life
symptom management
skills.
6. Can death be in someone's best interests?
 Inadequate standards of care
• Non-maleficence – to do no intentional harm.
 Lack of accountability in the care of dying 1. A duty not to cause intentional harm.
patients. 2. Fundamental tenet of practice
3. Medical treatments have side effects but  Hospice care is a type of palliative care for
ultimately save/improve lives. people who are in their final weeks or
4. In end of life decisions the question of how much months of life.
harm is caused by the treatment needs to be  Palliative care is for a person of any age,
considered, as does the question of whether death whether or not his or her illness is terminal.
itself is always a harm. Today, palliative care can help anyone who has a
• Justice serious illness. Palliative care could
1. Resources!
2. Cost of medication
3. Availability of care/intervention Palliative care is
4. Clinical trials  Excellent,evidence-based medical
5. Evidence based symptom management treatment
6. Difficulties related to evidence in palliative care  Vigorous care of pain and symptoms
throughout illness
BEST INTEREST  Care that patients want at the same time
• The professional’s obligation to promote a as efforts to cure or prolong life,when
patients best interests. appropriate
• Two forms of best interest (Ellis 1996) Palliative care is not
– Experiential – a person personal tastes and  “giving up” on patients
desires  In place of curative or life prolonging
– Critical – relates to matters of judgement, the care
intrinsic value of human worth.  same as hospice
• Applied to decision making by persons other than
the patient determines the highest Importance of Concept to Nursing Practice
benefit amongst available options after considering •Understanding of the palliative care concept will
costs and benefits. help to enhance patients’ quality of life.
LIFE PROLONGING TREATMENT •In order for palliative care to benefit the patient,
 Any treatment which has the potential to it must be used to the best of its abilities.
postpone death. •It is an evolving concept, nurses must
 Includes CPR, ventilation, renal dialysis, continually stay educated on any changes made
specialised treatments such as chemotherapy, to the palliative care concept
antibiotics for severe infection and artificial nutrition •Nurses must know when to introduce to topic of
and hydration. BUT use of antibiotics, nutrition palliative care to patients and their family.
and hydration may be justified if they •Must not be afraid to bring up the topic of
symptomatically palliative care, or to suggest it to a physician.
improve the patient.
FOCUS OF CARE How Palliative Care is Different from Hospice
• High-quality treatment and care towards the end Care?
of life includes:
– palliative care that focuses on managing pain and
other distressing symptoms
– providing psychological, social and spiritual
support to patients supporting those
close to the patient.
HOW DECISION ARE MADE
• Decision making in care towards the end of life is
essentially the same as for any other
phase of clinical care.
• We use the term ‘overall benefit’ to describe the
ethical basis on which decisions are
made about treatment and care for adult patients
who lack capacity to decide.
• Nutrition and hydration provided by tube or drip
are regarded in law as medical
treatment.
• Some people see nutrition and hydration, whether
taken orally or by tube or drip, as part
of basic nurture for the patient that should almost
always be provided

HOW IS PALLIATIVE CARE IS DIFFERENT