pain and symptom management in palliative care · pain and symptom management in palliative care...
TRANSCRIPT
Pain and symptom
management in palliative
care
Margaret Fitch
March 2018
Plan for session
Highlight the importance of attending to pain and other symptoms in palliative and end-of-life care
Review key principles/approaches to pain and symptom management
Emphasize early identification and intervention approaches in symptom related care
World Health Organization (WHO)
Defining Palliative Care
An approach that improves the quality of life of patients and their families facing the problems 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, psychosocial, and spiritual
Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to understand and manage distressing clinical complications
Current perspectives on palliative care
Integrated approach
Transcends disciplines, models of care, diseases
Delivers effective and timely care to all those who need it
throughout the course of illness
Not reserved for the weeks and months before the end of
life when all other options are exhausted
End of life care is part of a palliative care approach;
planning for it needs to start early
Focus on the family and bereavement are important
Hawley’s Bow Tie Model
Areas of Need
Psychological
Social
Spiritual
Informational
Physical
Emotional
Practical
M. Fitch/CCO Supportive Care Program Committee/2002
Individual
Unmet Needs Influence Quality of Life
unmet needs
(morbidity)
Most important to patients and
families at end of life
Pain and symptom management
Preparation for the end of life
Relationships between patients, family
members and healthcare providers
Achieving a sense of completion
Roles for nurses in palliative care
Support patients/family members
on their journey
Limit the impact of symptoms
and side effects (assess routinely
and treat promptly)
Assist patients and families in
coping with the challenges of the
illness, dying and death
Providing symptom management:a key role for nurses
Assessment/monitoring
Intervention
Basic intervention
Education
Referral prn
When should we monitor for symptoms?
What should we be monitoring?
How do we monitor?
Exercise
Classifying Symptoms:
Body System Framework
Cardiovascular
Central Nervous System
Gastrointestinal System
Genitourinary System
Hematopoetic System
Hepatic System
Integumentary
Pulmonary System
Reproductive System
Psychosocial
When to Monitor Symptoms
At baseline
Throughout care period
How frequently?
What approach?
Screening
Assessment
Evaluation
Monitoring Symptoms
Supporting Structures
Access to information (blood, x-ray, doctors’ notes, etc)
Predefined bloodwork parameters
Physician availability/direction
Medical Directives
Nursing involvement
Attention to symptoms
If it is not assessed, it is not addressed
If it is not measured, it is not managed
Basic approaches… Medications and doses prescribed should be based on careful assessment of
the dying person’s symptoms and problems.
Doses should be proportionate to symptoms identified, and response to
treatment should be regularly re-assessed.
The burden of how medication is given and of potential side effects should
be minimized. Palliative care medications at the end of life are usually given
via the subcutaneous route, which is generally the least invasive and most
reliable route in the dying patient.
Persistent symptoms require regular rather than PRN (as needed) orders.
PRN orders should be written for intermittent symptoms, and to cover
possible 'breakthrough' events for persistent symptoms.
Basic approaches cont’d Anticipatory PRN prescribing for problems which may occur during the
dying process (e.g., delirium / agitation; respiratory secretions; pain) is an
important aspect of good end-of-life care. This may include crisis orders to
cover foreseeable problems in particular patients, such as bleeding, severe
respiratory distress, or seizures.
To ensure prompt and effective symptom control, it is important to plan
ahead for access to medications for the common symptoms which occur in
dying patients, and make sure that caregivers are able to give the necessary
medications. The practicalities of how this is managed will vary according
to the setting of care – ie, whether the person is dying at home, in an acute
hospital, in a nursing home, or in a palliative care unit.
Common physical symptoms
Pain
Delirium / agitation
Dyspnea
Respiratory secretions
Mouth care and skin care
Bladder and bowel care
Nausea and vomiting
Weight loss (cachexia)/loss of appetite (anorexia)
Pain: contributing factors Bone metastases and their complications including
pathological fractures and spinal cord compression
Malignant or non-healing wounds
Infection
Radiotherapy / chemotherapy effects (usually short term)
Lymphedema
Depression / anxiety / fear
Frailty, decreasing mobility or becoming bed-bound
Constipation and urinary retention.
Pain
Pain is whatever the patient says it is, existing whenever the
patient says it does (McCaffery, 1968)
Pain is an unpleasant sensory and emotional experience related to
potential or actual tissue damage modulated by the patient’s
Mood
Morale
Meaning of the pain for the patient (Twycross, 2003)
Pain has 4 dimensions
Total pain
Physical
Social
Spiritual
Emotional
Pain can be acute or chronic
Acute Chronic Time course Transient Persistent
Meaning to the
patient
Positive as it draws attention
to injury or illness
Negative as it serves no useful purpose
No beginning and no end
Concomitants Fight or flight Vegetative
• Tachycardia • Sleep disturbance
• Tachypnoea • Lethargy
• Sweating • Anorexia
• Dilated pupils • Constipation
• No joy in life
• Somatic preoccupation ( patient
becomes the pain)
• Personality change
pain assessment should include
Onset = when the pain started
Location = where the pain is located (body chart)
Duration = How long does the pain last? Is it constant or
intermittent?
Characteristics
Aggravating factors
Relieving factors
Treatment
Measurement using a scale
Total pain… How does pain affect daily living?
Past medications and effectiveness
Fears about pain and opioid analgesics
Other symptoms – constipation, nausea…
Emotional status
Personality
Family support
Description of Pain
Type Description
Bone and soft tissue pain Tender, deep, gnawing,
aching, all over
Neuropathic pain Burning, shooting, stabbing,
scalding
Visceral pain Spasms, cramps, colicky
CNS Posterior head pain, pressure,
nausea, headaches
Mixed pain Mixed symptoms
Barriers to effective pain control
Three kinds of barriers:
Problems related to health care professionals
Problems related to patients
Problems related to the health care system
Barriers related to health care professionals
Inadequate knowledge of pain management
Poor pain assessment
Concern about regulation of controlled substances
Fear of patient addiction
Concern about side effects of analgesics
Concern about patients becoming tolerant to analgesics
Barriers related to patientsReluctance to report pain
Concern about distracting physicians from treatment of underlying disease
Fear that pain means disease is worse
Lack of knowledge about principles of basic pain management
Concern about not being a “good” patient
Reluctance to take pain medications
Barriers related to patients
Fear of addiction or of being thought of as an addict
Worries about unmanageable side effects (such as constipation, nausea, or clouding of thought)
Concern about becoming tolerant to pain medications
Poor adherence to the prescribed analgesic regimen
Financial barriers
Problems related to the health care system
Low priority given to pain treatment
The most appropriate treatment may be too costly for patients
and families
Restrictive regulation of controlled substances
Problems of availability of treatment or access to it
Opioids unavailable in the patient’s pharmacy
Unaffordable medication
Managing pain: The World Health
Organization Pain Step Ladder
Step 1 = Mild pain
Step 2 = Moderate
pain
Step 3 = Severe pain
Use of the ladder for acute and
chronic pain
Analgesia
Step 1: Mild pain
Aspirin
Paracetamol
NSAIDs
± Adjuvant
Step 2: Moderate pain ≠
Codeine
Tramadol
Combination drugs (stopayne, stillpayne)
Lentogesic
± Adjuvant
Step 3: Severe pain ≠
Morphine
4 hourly drug
Starting dose 5/10mg every 4 hours = no ceiling
Titrate (Twycross, 2003)
5-10-15
20-30-40
60-80-100
140-180-220
± Adjuvant
Adjuvants
Steroids (reduce edema)
Bisphosphonates (control bone pain)
Anti-depressants (relieve neuropathic pain)
Anti-convulsants (relieve neuropathic pain)
Local anesthetics (mouth ulcers)
Breakthrough pain
Prescribe breakthrough dose of morphine oral solution of a sixth
of the total daily dose
Breakthrough dose to be taken hourly as needed (prn)
Breakthrough dose is extra – do not change regular schedule of
morphine
If more that 2 breakthrough doses are needed per day or pain
relief is inadequate increase regular dose
Remember to increase breakthrough dose when regular dose is
increased
Side Effects of MorphineSide effect Management
Constipation Regular laxative – softener and stimulant
Consider availability and cost
Dry mouth Frequent sips of water
Home made saline + 1 teaspoon Soda Bic
per 250ml
Ice chips
Sugar free chewing gum
Do not use glycerine based products as
these dry oral mucosa
Nausea and vomiting Haloperidol 1.5 to 3 mg nocte
Methoclopramide 10mg every 8 hours
Sedation Expect to settle in 2-3 days
Explain to patient
Physical dependence and tolerance Some tolerance may occur
Do not require ever-increasing upward adjustments of
dosages
Increases are related to disease progression
May be some withdrawal symptoms if drug is stopped
suddenly
Addition – difference than dependence or tolerance – is
rare in chronic pain situations
Methodology Educate patient and family and other service providers
Give medication regularly according to the half life
Always provide breakthrough dose
Give orally unless contraindicated
Anticipate adverse effects
Nausea and vomiting
Constipation
Sedation and drowsiness
Confusion
Uses of Morphine other than Pain
Cough
Suppresses
cough
Diarrhoea
Constipatory
effect
Dyspnoea
Suppresses the
perception of
breathlessness
Physical comfort Hygiene
Positioning
Equipment
Oral hygiene
Skin care
Environment
Complementary therapies
Music therapy
Acupuncture
Massage
Delirium a condition of disturbed consciousness, with reduced
ability to focus, sustain or shift attention; altered cognition
or a perceptual disturbance
symptoms develop over hours to days and tend to
fluctuate during the course of the day, and
Delirium may be:
hyperactive (presenting with agitation, hyperarousal, and
restlessness), or
hypoactive (presenting with drowsiness, lethargy and
reduced levels of arousal), or
a mixed pattern in which the symptoms fluctuate between
hyperactive and hypoactive.
Delirium/agitation Despite its prevalence in palliative care, delirium is
underdiagnosed, especially hypoactive delirium.
The onset of delirium is associated with a worsening
prognosis.
Delirium in palliative care patients can be a potentially
reversible condition.
Delirium is more common in patients with previous
cognitive impairment or dementia, which makes
identification and assessment more difficult.
Delirium Delirium is a condition which causes significant distress
to patients, families and staff.
The presence of delirium makes it much harder to assess
and treat other problems such as pain or depression.
Since delirium symptoms fluctuate, assessment should be
part of routine care. Like pain, delirium is most accurately
assessed if it is monitored regularly rather than being
screened for intermittently.
Validated scales have been developed.
Possible causes Infection
Metabolic and biochemical disorders (eg, renal failure, hypercalcaemia,
hyponatraemia, dehydration, hypoxia, hypercapnia)
Hepatic encephalopathy
Structural cerebral disease (eg, primary or secondary cancer, leptomeningeal
disease, radiotherapy to the brain)
Medications (eg, psychoactive medications such as benzodiazepines,
opioids, corticosteroids, antidepressants, or medications with an
anticholinergic effect)
Drug withdrawal (eg, alcohol, benzodiazepines, nicotine)
Environmental (hospital admission and associated procedures, uncorrected
sensory deficits eg, vision and hearing).
Terminal restlessness Terminal restlessness is a cluster of symptoms. Most often
described are a combination of agitation and altered
mental state, occurring close to the end of life (including
hallucinations, moaning, groaning).
There is no agreed definition of this condition.
Its relationship with delirium, and its management and
potential for reversibility are poorly understood.
Goal is to settle (not reverse).
Breathing problems a significant issue for many palliative care patients
occur with increasing frequency in the terminal stage of
most palliative conditions.
Problems can include:
cough
dyspnea
hemoptysis
obstruction
respiratory secretions
Potentially reversible causes… Pulmonary embolus
Co-morbid lung diseases (e.g., COPD)
Anemia
Weakness and muscle wasting due to cachexia anorexia syndrome
Pleural effusion
Pericardial effusion or tamponade
Ascites or raised intra-abdominal pressure
Lung toxicity of chemotherapy or radiotherapy
De-conditioning / reduced physical fitness
Anxiety / panic / depression
Need for aids, equipment, increased home support, or modification of daily
activities to minimize breathlessness.
Dyspnea Primary causes:
primary lung cancer
other cancer involving lung or chest wall, or obstructing the
airways or mediastinum
lymphangitis carcinomatosis
end-stage cardiac failure
end-stage respiratory failure
neuromuscular diseases (e.g., Motor Neurone Disease)
Dyspnea Subjective symptom – what the person says it is like
Assessment
Onset
Provoking/palliating
Quality
Region/radiation
Severity
Treatment(s)
Understanding/impact
Values/goal
Physical assessment
Managing SOB
Identify what helps when the person is SOB and reinforce
the effective strategies
Use a fan or open window to increase air circulation
directed at the face or nose
Turn down temperatures in the house
Try resting in an upright position
Try relaxation and breathing exercises (diaphragmatic
breathing, pursued lip breathing)
Management of SOB
Use aids as able/available: wheelchair, portable oxygen,
walking aids
Provide information about the SOB and/or disease process
(if desired by patients); help to recognize what triggers
SOB episodes
Engage in cognitive behavioral therapy – relaxation
therapy, guided imagery – to help manage the SOB
(decrease anticipatory worry)
Positioning when SOB
If walking, suggest stopping and leaning against a wall
or sitting slightly forward resting on arms on table
If standing, encourage good lung expansion – lean
against a wall
If sitting, try to maximize air expansion – arm chair or
edge of bed and lean forward slightly securing aims on
arm rest or pillows
If lying down, assume semi- to high fowlers position; if
on side, position on affected side to maximize
expansion; ensure pillows are supporting small of back
Pharmaceutical interventions
Supplemental oxygen is recommended for hypoxic patients
experiencing dyspnea; Supplemental oxygen is not
recommended for non-hypoxic, dyspneic patients.
Systemic opioids, by the oral or parenteral routes, can be
used to manage dyspnea in advanced cancer patients.
Nebulized opioids should not be used to treat dyspnea.
Respiratory secretions Loss of gag reflex
Saliva secretions continue
Unable to cough or clear secretions; fluids in back of
throat – gurgling or cracking
May sound like choking – ‘death rattle” may be offensive
language
Management:
No food or fluids by mouth
Postural drainage
Avoid suctioning
Scopolamine (hyoscine) ear patch/sc
Mucous membranes (dry/painful)
Eyes
Keep conjunctive moist
Lips and nares
Prevent evaporation
Mouth and teeth
Keep moist and clean
Candida?
Humidification
Skin care Support: thick (<4 inches) egg crate mattress, or air
mattress, etc
Avoid plastic or abrasive materials
Cover reddened pressure points
Keep at suitable body temperature
Continue turning
Bathe – pat dry, air dry
Leaking skin – cover with absorbent, non-stick dressing
Bleeding – pressure dressings, topical thromboplastin,
silver nitrate sticks
Diarrhea
Abnormal increase in stool liquidity and frequency over
baseline (4-6 stools per day) which may be accompanied
by abdominal cramping
Caused by cancer treatments, surgery on the stomach or
intestines, or by emotional stress
Long term – may lead to dehydration or low levels of salt
and potassium (essential minerals for the body)
Assessment Severity of diarrhea
Extra bowel movements in a day above what is normal
Description of stools (color, hardness, amount, oily, blood,
straining?)
Presence of ostomy
Fever (>38)
Interference with daily living activities
Other symptoms (N&V, loss of appetite, thirst, dizziness, etc)
Able to drink fluids (8-10 glasses per day)
Self care activities/what is working vs not working
Management of Diarrhea
Teach patient and family
the signs to report, need for low fiber, high protein diet and increase in fluids, avoid foods that irritate the bowel
Try bananas, applesauce, oatmeal, rice, cooked carrots, etc
Replace potassium and salt as needed (bananas, potatoes)
Several small meals
Avoid lactose foods –cheese, milk, yoghurt; avoid large amounts of fruit juices
Maintain skin integrity around rectum and ostomy
Explain need for antidiarrheal agents (e.g.,Immodium, Lomotil)
Encourage patient must report symptoms immediately or start interventions as directed
Discontinue stool softeners
Constipation
Constipation is a frequent complaint in the general
community, and more common in palliative care patients.
Chronic constipation is one of the commonest side effects
of opioids, and occurs in 40 – 70% of patients treated for
cancer pain with oral morphine.
However other causes of constipation should also be
sought and addressed
ConstipationContributing factors
opioid induced bowel dysfunction.
Medications – 5-HT3 antagonists, anticholinergics, iron, some anti-
hypertensives
Decreased oral intake, dehydration, alterations in diet
Metabolic abnormalities (e.g., hypercalcaemia, uraemia, hypothyroidism,
hypokalaemia, diabetes)
Decreased mobility, weakness, difficulty accessing toilet facilities
Bowel obstruction
Neurological disorder or damage, eg, due to spinal cord lesion
Autonomic neuropathy
Depression
Terminal phase.
Constipation
Constipation in palliative care is fundamentally defined by
the patient
If the patient complains of constipation or defecates less
than three times per week, assessment of bowel habits is
warranted
A thorough patient history and physical examination are
essential
A checklist of key facts should be used to assess causative
factors and impact of constipation – this assessment
should be continuous throughout the patient’s care
If malignant intestinal obstruction is suspected, this should
be investigated by radiology
Constipation Preventative measures such as ensuring privacy and
comfort, encouraging activity and increasing fluid intake
should be ongoing during the patient’s care
Rectal intervention should be avoided where possible, but
may be necessary where oral medication has been
unsuccessful in re-establishing a regular bowel pattern
Generally, a combination of a softener and a stimulant
laxative is recommended.
Prophylactic co-prescribing of regular laxatives along with
regular opioids is identified as best practice.
Nausea and Vomiting
Emesis is a complicated process because stimulation of the
vomiting center by the visceral and vagal afferent pathways
of the GI tract, CTZ, vestibular apparatus and the cerebral
cortex
Common in cancer patients; can be several etiologies
Nausea: Subjective perception that emesis may occur
(feeling of queasiness); vomiting: a forceful expulsion of
stomach contents through the mouth (may include retching)
Acute- few minutes to 24 hours after treatment
Delayed - develops and persists 24 hours post chemo
Several etiologies Chemical
Drugs
Biochemical
Toxins
Gastrointestinal
Gastric irritation
Obstruction/constipation
Gastric stasis
Mass effect
Anotomic/structural
Cerebral
Increased intracranial
pressure
Psychological
Vestibular
Motion sickness
Cerebellar tumor
AssessmentSeverity of and worry about
N&V (rating scale)
Presence or absence of N&V a
number of times per day
Able to tolerate fluids
Able to eat within last 24 hours
Feeling dehydrated (dizzy, dry
mouth, increased thirst, rapid
heart rate, decreased amount of
urine)
Abdominal pain?
N&V interfere with normal
daily activates?
Medications being used for
N & V
Self-care strategies being
used for N & V
What is working? Not
working?
Share other strategies
(education)
What else would s/he be
willing to try
Documentation of
assessment
Pharmacologic interventions/combinationsSerotonin Antagonists
block the neurotransmitter in the
gut and in the brain
Very effect against acute severe
nausea and vomiting
Combined with corticosteriods
Granisetron, Ondansetron,
Dolasetron
Side effects-headache, diarrhea,
constipation
Phenothiazines
prochloperazine, chlorpromazine
various routes available
associated with extrapyramidal
effects, dry mouth, orthostatic
hypotension, blurred vision
Substituted Benzamide
metoclopromide
side effects include sedation,
akathesia, acute dystonic reactions
Corticosteriods
Dexamethasone, prednisone
Side effects-perineal itch(IV), immediate vomiting(IV), insomnia, euphoria, hyperglycemia, fluid retention, hiccoughs
Butyrphenones
haldol, droperidol
extrapyramidal effects
Cannabinoid
Marinol (sedation, dry mouth, euphoria, dizziness)
Other (Diphenhydramine – Benadryl; Diphenhydranate – Gravol; Lorazepam – Ativan
Non-Pharmacological Intervention
Relaxation, guided imagery, hypnosis, meditation, music,
distraction, acupressure, ginger tea
Avoid strong odours, sips fluids slowly, eat light meals;
eat food at room temperature or cold; bland, soft, easy to
digest food; dry foods like crackers, avoid spicy/greasy
foods
Rinse mouth out before and after eating
Sit or lie with the upper body raised one hour after eating
Loss of appetite (anorexia) Loss of weight (cachexia) and appetite (anorexia) are
significant concerns for many palliative care patients, and
independently predict a poorer prognosis.
The palliative conditions in which cachexia and anorexia
occur most frequently are progressive malignancy,
HIV/AIDS, end-stage cardiac failure, end-stage
respiratory failure, chronic renal failure, chronic liver
disease, and advanced dementia.
Symptoms – loss of appetite Complaints that food tastes ‘funny’
Being put off by food smells
Not liking food that was once a favourite
Difficulty chewing and swallowing
Tired of eating and giving up after a few mouthfuls
Eating only 1 or 2 types of food
Feeling full sooner than expected or early satiety
Potentially reversible reasons… Mouth sores and infection – mucositis, oral thrush
Dry mouth
Trouble swallowing/dysphagia
Nausea and vomiting
Diarrhea / constipation
Weight loss/weight gain
Pain
Depression
Family, social and cultural expectations related to food, diet, and body weight
Inappropriate presentation of food
De-conditioning / reduced level of activity
Dysgeusia - changed sense of taste and smell
Malabsorption
Dyspnea
Medication effects.
Managing loss of appetite Keep mealtime and snacks flexible
include variety and choice; eat regularly; small, frequent meals; eat
when able to
Make meals appealing and fun
Presentation and portions; focus on the meal
Cover up tastes and smells
New spices, use marinates, serve food cold/room temperature; clean
mouth
Make every calorie count
Increase nutritional value of each meal (small high-calorie and high-
protein meals every 1-2 hours)
Managing loss of appetite Stimulate the appetite
Exercise before meals, pleasant atmosphere for eating, drink
juices before meals (not with meals),
Use of nutritional supplements
Check with physician first (what is available?)
Use of tube feeding (risk of malnutrition?)
Use of appetite stimulates
Doctor may prescribe these drugs
Taste / smell changes Food may taste bitter, metallic, or not a flavourful
Results from treatments: chemotherapy, surgery,
radiation
Results also from damage to nerves involved in taste,
mouth infections, nausea and vomiting, dental or gum
disease
Contributes to loss of appetite, weight loss, and
malnutrition
Managing taste/smell changes:
general tips
Eat when hungry
Rinse mouth before and after eating (solution of water, salt &
baking soda)
Citrus fruits may help stimulate taste buds (avoid if mouth
sore)
Try different foods than you usually take
Try to eliminate strong food smells
Use seasoning/marinate meats
Suck on sugar-free candies
Try different flavours (experiment): salt, tart, sugar
Difficulty swallowing Mucosal lining (rapidly dividing cells) very sensitive
to effects of chemotherapy and radiation
Mucositis = inflammation of the mucous membrane
that line the mouth, throat, esophagus and intestine (5-
14 days after treatment begins)
Symptoms: burning, redness, pain and discomfort,
sensitivity to hot and cold, raw feeling in throat
Managing difficulty swallowing Ice chips before, during & after treatment
Maintain good nutrition, plenty of fluids, good oral hygiene
Small frequent meals; avoid spicy, salty, acidic fruits, etc
(use straw if mouth is sore)
Soft and bland foods (i.e., cream soups, masked potatoes,
yogurt, eggs, etc)
Thick liquids (versus thin)
Pain medications/gels and ointments/mouthwashes and
rinses
Weight loss (cachexia) Common among cancer patients (1st noticeable sign of
disease
40% at time of DX
80% with advanced disease (also with cachexia)
Cachexia – wasting – combination of weight loss and
muscle mass loss which s accompanied by fatigue,
loss of energy, weakness and inability to perform
daily tasks.
Weight loss Starts with loss of appetite…side effects of cancer and
treatment contribute further to downward trend…
Changes to the immune system or metabolism
Nausea & vomiting
Constipation
Depression
Mouth sores, loss of taste
Pain
Difficulty swallowing
Managing weight loss Relieving side effects
Controlling weight loss
Increasing amount of food you eat
Consider a tube directly to the stomach
Nutrients (short term support – IV)
Medications (prescriptions)
Nutrition counselling / food diary
Screening Look for nutritional risk prior to treatment starting
Weight changes over past year
Changes in the amount and type of food eaten vs usual
Problems that have affected eating
Ability to walk and do other activities
[General physical exam]
Assessment Eating and food have great social, cultural and psychological
significance for patients and their families, and issues relating
to nutritional support are often socially and ethically complex.
Appetite is a subjective symptom
Monitor throughout the course of care
Percentage of weight loss over time evaluates malnutrition:
> or equal 5% loss of usual body weight in one month.
> or equal 7.5% loss of usual body weight in 3 months.
> or equal 10% loss of usual body weight in 6 months.
Nutrition in advanced disease
It is common for patients with advanced disease to want
less food (and need less food).
Patients prefer soft foods and clear liquids
Focus on eating for pleasure rather than getting enough
nutrients
Two courses of action: maximize intake, and allowing the
patient to ‘eat what they like’
Nutritional support
Wishes and needs of the patient and family
Improve patient quality of life?
Benefits outweigh risks?
Is there an advanced directive (one type is a living will)
Parenteral nutritional support Benefits
May make patient more
alert
May be a comfort to the
family
May relieve nausea
May make the patients
feel more hopeful
Risks
Surgery needs to place tube
May increase saliva in
mouth and throat
May cause diarrhea or
constipation
May cause nausea or
infection
Makes care harder for the
caregiver
Common psychosocial symptoms
Anxiety Untreated pain
Untreated or poorly managed symptoms
An underlying anxiety disorder (e.g. panic disorder, phobia)
Fear of death
Family distress
Drug induced.
Depression a sense of burden
loss of dignity
a desire for death.
Helplessness/hopelessness
Fear/panic
Needs and Examples of Patients
with Life-Threatening Illness
• finances
• childcare
• housekeeping
• legal
• self-worth
• body image
• coping
• dying
• family
• relationships
• school, work
•meaning of life
• suffering
• pain
• legacy
•meaning of death
Informational
Emotional
Physical
• disease
• procedures
• coping skills
• symptoms
• services
• dying process
• end-of-life decision making
• pain
• fatigue
• vomiting
• nausea
• last hours
• anger
• despair
• fear
• hopelessness
• grief
Psychological
Social
Spiritual
Practical
Living with wide-spread
disease/chronic illness
What does this really mean?
What is priority for me?
What is priority for my family?
Living with uncertainty
Advanced Disease(facing the end of life)
site of last days
caregiver roles/responsibilities
anticipatory grieving
reducing symptom distress
finding hope
Coping with Dying
Coping with the unknown
Coping with the meaning of death
Coping with pain arising from the losses that occur at death
Coping with practical arrangements
Coping with Dying
Coping with
communicating with others
regarding death
Coping with reconciling
conflicts and letting go
Coping with changing
priorities
Family/Caregiver Concerns
Relationship with the person who is dying
To be with the dying person
To feel helpful to the dying person
To be assured of the person’s comfort
To be informed of the person’s condition
To be aware of the person’s impending death
Family/Caregiver Concerns
About oneself
To express one’s own feelings
To receive comfort and support
from others
To receive acceptance and
support from others
Last Days of Living(focus on family)
Symptom management
is key
Support for family
members
Patient Journey:
Influencing factors
1. Nature of the illness acute versus chronic experiences
Disabling, disfiguring
2. Course of the diagnosis and treatment
3. Personality and coping style
4. Interference with daily living/ life goals Work life
Family life
Social life
Distress
an unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with the ability to cope with cancer
extends along a continuum from common, normal feelings of vulnerability, sadness, and fears, to problems that are disabling (e.g., true depression, anxiety, panic, feeling isolated, spiritual crisis) (Holland, 1999)
Conceptualizing Psychosocial Distress in
Serious Illness
Normal
Distress
Severe
Distress
• Fear
• Worries
• Sadness
• Depression
• Anxiety
• Family Dysfunction
• Spiritual Angst
Psychosocial care (support)
What patients find
helpful/supportive:
Information
Support
Communication
Access to support helps patients
reduces anxiety and emotional distress
enables adaptation to situation
assists in making decisions (involvement)
influences compliance with treatment
assists in psychosocial coping
influences satisfaction with care
influences quality of life
assists in improving communication
Factors influencing differences in the amount of support
sought by patients:
gender
age
educational level
time from diagnosis
cultural context
socio-demographic background
Types of support
Emotional
Social
Informational
Instrumental (practical)
Cautions Not all patients want the same
type of support,
in the same level,
or detail,
at the same time
Cancer Patients Entering the Cancer System
100%
Providing Supportive Care
Services
10%–15% will also require
this level of service
20% will only require this
level of service
30% will also require this
level of service
35%–40% will also require
this level of service
All patients require screening of needs on an ongoing basis.
All patients require relevant information, basic emotional support,
good communication, and symptom management.
All patients require assessment of needs on a regular basis.
Many will need additional information,
education, and encouragement to
seek additional help
Some will require specialized/
professional intervention
for symptom
management/distress
A few may
need
complex
care
Who is at Risk?
Major depression at the time of diagnosis
Certain types of illnesses
Advanced stage of disease
Poorly controlled pain
Increased physical impairment or pain
Treatment with some types of drugs
Who is at risk? (cont’d)
Previous history of major depression/anxiety
Social isolation/lack of family support
Family history of anxiety/depression/suicide
History of alcoholism or drug abuse
Increased number of stressful life events
Other serious medical problems (e.g., heart attack,
stroke)
SLEEP
INTEREST
GUILT
ENERGY
CONCENTRATION
APPETITE
PSYCHOMOTOR RETARDATION
SUICIDE
Symptoms of Depression
Depressed MOOD or SADNESS daily - OR-
Substantial loss of ENJOYMENT/INTERESTONE OF:
(most of the day, persisting for 2-3 weeks)
Diagnosis
5/9 Symptoms
Suggestions for assessing
What would be most helpful for you?
What would be most supportive for
you today?
What is working well for you? What is
not working well?
Informational Concerns
Critical Question:
What information would be most useful to you
right now?
Emotional issues
Critical Questions:
What is most troublesome for
you right now?
What do you think would be
most helpful to you at this time?
Psychosocial distress
Critical questions:
Are there any particular things that make you feel
upset/distresses?
Are you worried about how your illness is affecting your
family?
How long have you been feeling this way (just today or prior
to coming here)
What are your sources of support?
Referral criteria
What is in your scope of practice?
What issues need to be handled by
someone with other expertise?
Who is available with that expertise?
Intervention Approach
Identify the stressor
Source of distress
Fix the stressor (if possible)
Manage the response to the stressor
Focus on outcomes, not specific strategies
Do not remove “safety net” (something that is
working if no alternative)
What can you do?
Respect individual differences
Accept symptom reports (person’s reality)
Recognize one size does not fit all
Recognize that family involvement will vary
Recognize that personal preferences will vary
Support individual choices/preferences
Be an effective communicator
Providing support
Emotional Being present/listening
Validating emotions
Suggestions re managing emotions
Social Connecting with family/friends
Connecting with others (peers, professionals)
Connections with spiritual community
Informational For problem-solving/emotional regulation
Instrumental Practical assistance (transportation, finances, legal, etc.)
Emerging Paradigm
Triage:
Screening for
Distress (6th Vital
Sign)
(items: re physical,
psychosocial,
weight change, and
practical concerns)
Standard (Basic) Health Care Professional (cancer care)
(care for all) Patient/Family Education
Volunteer/Peer Support/Information
Specialized Health Care Professionals
Mental Health & Therapeutic Counseling
Symptom Care Therapeutic Group Consulting
Complex Needs,
Highly Specialized Health Care Professionals/teams
Consultative Care
Screening/Assessment
Screening
rapid method to prospectively identify individuals
experiencing difficulty
Assessment
completion of a series of tasks in the early phases of a
therapeutic relationship (with a patient)
Screening, Interventional and/or Referral to Supportive Care Services
to clinic appointment
Complete Screening Tool
Dialogue with Patient (based on score)/ Basic Intervention
Menu of Services offered and tailored plan initiated (empowering to act)
(increasing timely access to services)
Symptom Distress Nutrition Information
Psychosocial Distress
Rehabilitation/ Exercise
Peer Support
Follow-up Follow-up Follow-up Follow-up Follow-up Follow-up
Assess &
Intervene
Assess &
Intervene
Assess &
Intervene
Assess &
Intervene
Assess &
Intervene
Assess &
Intervene
Completing the screening for
distress standardized instruments
Completing the Screening Tool
Cascade of investigation followed
by evidence-based intervention
Screening (triage; rapid identification;
patient perspective)
Brief Assessment (opening the
conversation)
Comprehensive Assessment
Focused Problem Assessment
Steps following screening
Open a dialogue with the patient;
initiate a therapeutic relationship
Ascertain patient perception of
problem
and negotiate a relevant plan of care
Select appropriate
interventions
based on
best evidence
Screening for
symptoms
and distress
Assessment of
risk factors and
focused assessment
of problem
Responding to distress: guide and algorithm
Green Zone
Score 1-3
Red Zone
Score 7-10
Yellow Zone
Score 4-6
This zone is considered a
mild level: the patient is managing
the problem and has low symptoms
or emotional distress.
This zone is considered a
moderate level: the patient is
struggling to manage the problem.
Targeted intervention is needed to
get the patient back into the green
zone.
This zone is considered a
severe level: patient problem is
out of control and placing them
at serious risk. Urgent response
by the clinic team or a referral is
demanded.
For all groups the following should take place:
1. Acknowledge scores in open dialogue with patient.
2. Ask patient about the impact of the problem from their perspective and the most distressing problem(s).
3. Provide psychosocial and supportive care to all patients as part of a therapeutic relationship.
4. Establish shared goals of care and action plan.
5. Follow through on action plan and document.
Linking to clinical practice
Standards
For patient care
For the practitioner
Practice guidelines
For the problem
For the practitioner
Algorithms/Referral Pathways
What happens with scores
What happens with intervention
What happens with referral
128
Evidenced Based Tools to Guide Care
http://www.cancercare.on.ca/toolbox/symptools/
Making knowledge available at point of care
iPhone app available for downloading on iTunes
129
Cancer Patients Entering the Cancer System
100%
Providing Supportive Care
Services
10%–15% will also require
this level of service
20% will only require this
level of service
30% will also require this
level of service
35%–40% will also require
this level of service
All patients require screening of needs on an ongoing basis.
All patients require relevant information, basic emotional support,
good communication, and symptom management.
All patients require assessment of needs on a regular basis.
Many will need additional information,
education, and encouragement to
seek additional help
Some will require specialized/
professional intervention
for symptom
management/distress
A few may
need
complex
care
Fitch, 2004
Teamwork and collaboration for effective
symptom/distress management Distress management takes a team with clearly defined roles and responsibilities
Connecting patients to the right symptom management and/or supportive care resource is an essential part of effective distress management
Clear referral pathways are required to effectively connect patients to resources/care that will be helpful to them and improve QOL
Patients 100%
• Assessment
• Information
• Basic Support
• Good Communication
• Symptom
Management
• Extra
Information/Education
• Encouragement to seek
help and Peer Programs
Specialized Professional
Intervention
• symptoms
• psychosocial distress
Intensive/Ongoing
Complex Interventions
20%
30%
35–40%
10–
15%
Services Required to
Manage and Cope
Fitch, 2004
Patients 100%
• Assessment
• Information
• Basic Support
• Good Communication
• Symptom
Management
• Extra
Information/Education
• Encouragement to seek
help and Peer Programs
Specialized Professional
Interventions
• symptoms
• psychosocial distress
Intensive/Ongoing
Complex Interventions
20%
30%
35–40%
10–
15%
Inter-professional team
interventions
Fitch, 2004
Screening for distress…and responding
Screening Acknowledgement Assessment Intervention Documentation
Patient Interactions
KNOW BATHERS framework
Introduced in the Screening for Distress
program
Used nationally
Get to know the patient and family
K- Knowledge of how to begin
N- Navigate the therapeutic relationship
O- Open to the patient and family perspectives
W- Welcome the family
Framework for Screening for Distress
B- Beginning understanding of the situation
A- Affect
T- Trouble
H- Handling
E- Empathy
R- Response/Referral
S- Screening follow up
Explore patient and family concerns.
What is most concerning to you at this time?
How can I be most helpful at this time?
Clarify patient expectations
Share key information
Key Questions for a focused/in-depth assessment
(problem identified)
▫ What is most concerning to you at this time?
▫ How do you feel about that?
▫ How is this affecting your day to day life?
▫ How long has this been going on?
▫ How are you handling that?
▫ What have you tried/how is that working?
▫ How can I be most helpful at this time?
▫ What questions do you have?
▫ Did you get what you needed?
Symptom Burdenone month – (N=2627)
Canadian Problem Checklist Data - % with issue
May 2012 (N=1451)
Common spiritual symptoms
Suffering has been described as a psychological or
spiritual state that can diminish an individual’s capacity to
find solace or peace in their present situation.
One can never anticipate the source of another person’s
suffering
Helplessness/hopelessness
Lack of meaning
Our study Interviews with palliative care patients and health care
providers about spiritual care
Patients talked about spirituality easily; HCPs had
difficulty
Patients expected spiritual support from HCPs; HCPs
were not clear it was their role to offer spiritual care
Patients wanted to be heard and validated; HCPs were
uncomfortable with the conversation
There is a likelihood of ‘missed opportunities’
Spiritual assessment: individuals without an
affiliation/ secular approach
What helps you when you are frightened and you
need support?
What helps you calm anxieties or mental or emotional
discomfort?
Is there unconditional love in your life?
Who are the most important people in your life?
To whom do you turn when you need extra help?
Are these people available now?
What besides other people would you call a source of
strength?
Spiritual assessment: individuals with affiliation
Is religion or (Higher Being) important to you?
How is your religion important to you?
What religious practices are helpful to you?
Are there restrictions or dietary laws associated with
the practice of your religion that you like to abide by?
Are there religious objects, books, music that you want
near you?
How is being sick affected your religious practices?
What happens when you pray or try to pray?
Patient/caregiver experience Growing recognition that health care providers need to
understand the patient/caregiver experience
Patients and family members may see what is happening
differently than HCPs
Understanding what is important to the individual and
what their expectations are for their lives is a first step to
designed a person-centered plan of care
Patient/caregiver engagement
Growing awareness of the importance of involving the
patient and the family member in decisions about their
care
Implies a need to ensure the individual understanding his
or her illness situation and potential treatment
options/choices
Implies an acknowledgement that the individual is the
expert in his/her life and body and has the right to make
decisions about what will happen with it
Shared decision-making
Growing emphasis on the need for shared decision-
making approaches in health care
Linked to person-centered care and patient engagement
Implies the need for information and understanding as
well as personal choice
Implies the need for astute communication between
patients and their care providers
I am respected
I am heard
I understand
I am involved
Nurse role in palliative care advocates for and supports persons
in their experience of living-dying.
provides comprehensive,
coordinated, compassionate and
holistic care.
attends to pain and symptom
management and provides
psychosocial, grief and
bereavement support.
includes all areas of practice:
clinical, education, administration,
research and advocacy.
Hospice palliative care(nurses are in all locations…)
General practice…
Specialized units…
Specialized (inter-professional) teams
Acute care settings
Home care and community settings
Long term care/nursing home settings
Nurses in palliative care
Generalists
palliative care is part of their practice/caring for
various patient populations
Specialists
palliative care is all of their practice/direct care
Advanced practice nurses
palliative care expertise, leadership through research
and education
Standard:Quality of Living-Dying
The PC nurse focuses on the quality of the
experience of the person who is living with and
dying from a life-limiting illness, as well as the
experience of the family.
The PC nurse practices with respect for the
personal meanings, specific needs and hopes of
the person who is living in the last phase of
his/her life and his/her family.
Standard:Comfort
The PC nurse utilizes a
knowledge-based, systematic,
holistic and evolving approach
to address symptoms and issues
specific to the living-dying
experience.
Standard:Transitions
The PC nurse provides care throughout multiple
illness trajectories of life-limiting illnesses, which
may occur over a short period of time (sudden death)
or may be a longer process (exacerbations of chronic
illness or recurrences of cancer). The PC nurse
supports the individual and his/her family through
these transitions, the dying process and throughout
the grief and bereavement processes.
The PC nurse assists persons and families to access
and navigate the health-care system.
Standard:Quality and Safety
The PC nurse practices in accordance with
legislation, policies, guidelines and tools
pertaining to assessment, information
sharing, decision-making, advance care
planning, pronouncement of death, after
death care, and grief and bereavement
support
Standard:Leadership
The PC nurse advocates for and promotes high quality and safe
palliative care.
The PC nurse advances HPC nursing through the generation and
application of knowledge and research.
The PC nurse is an essential team member of the inter-
professional team and establishes collegial partnerships and
contributes to the professional development of students, peers,
colleagues and others through consultation, education, leadership
and mentorship.
The PC nurse communicates and advances the distinct
contribution of nursing to the inter-professional team.
Standard:Personal and Professional Growth
The PC nurse recognizes the privileges and
challenges of working with persons who are living-
dying and their families.
The PC nurse understands his/her own personal
experience in response to suffering and death.
The PC nurse recognizes his/her personal needs and
practices self-care while experiencing multiple
losses during the care of persons who are dying and
their families.
Caring for people in the final hours is
an important and scared aspect of
nursing practice
Care at the end of life must be about
whole person care
It is about the art and science of nursing
10 core competencies in palliative care - global core
competencies for clinical practice in palliative care that are
important for all practitioners, irrespective of discipline
apply the core constituents of palliative care in
the setting where patients and families are
based
enhance physical comfort throughout patients’
disease trajectories
meet patients' psychological needs
meet patients' social needs
meet patients' spiritual needs
10 core competencies in palliative care - global core
competencies for clinical practice in palliative care that are
important for all practitioners, irrespective of discipline
respond to the needs of family carers in relation to short,
medium and long-term patient care goals
respond to the challenges of clinical and ethical decision-
making in palliative care
practice comprehensive care co-ordination and
interdisciplinary teamwork across all settings where
palliative care is offered
develop interpersonal and communication skills
appropriate to palliative care
practice self-awareness and undergo continuing
professional development.
Nurse competencies: Ireland
GeneralistProfessional and Ethical
Practice
Holistic Approaches to
Care and Integration of
Knowledge
Interpersonal
Relationships
Organization and
Management of care
Personal & Professional
Development
Specialist
Clinical Focus
Patient Client
Advocacy
Education & Training
Audit & Research
Consultancy
Advanced practice
Autonomy in Clinical
Practice
Expert Practice
Professional and
clinical leadership
Research
Nurse Competencies for Palliative Care
Canada - 2010
1. Care of the Person and Family
2. Pain Assessment and Management
3. Symptom Assessment and Management
4. Last Days/Hours/Imminent Death Care
5. Loss, Grief and Bereavement Support
6. Inter-professional /Collaborative Practice
7. Education
8. Ethics and Legal Issues
9. Professional Development and Advocacy
10. Professional Growth and Self-Care
11. Research and Evaluation
12. Advocacy
Common outcome measures at end of life
quality of life
physical symptoms
emotional and cognitive symptoms
advance care planning
functional status
spirituality
grief and bereavement
satisfaction and quality of care
caregiver wellbeing
Top ten key measurements in
palliative/end-of-life care
Measure 1
NAME:
hospice and palliative care – comprehensive
assessment
Definition:
Percentage of patients for whom a
comprehensive assessment was completed
Measure 2
NAME:
Screening for physical symptoms
Definition:
Percentage of seriously ill patients receiving
palliative care in an acute hospital setting >1
day or patients enrolled in a hospice >7 days
who had a screening for physical symptoms
(pain, dyspnea, nausea, and constipation)
completed
Measure 3
NAME:
Pain treatment (any)
Definition:
Percentage of seriously ill patients receiving specialty
palliative care in an acute hospital setting >1 day or
patients enrolled in a hospice >7 days who screened
positive for moderate to severe pain on admission, and
the percent receiving medication or non-medication,
within 24 hours of screening
Measure 4
NAME:
Dyspnea Screening and Management
Definition:
Percentage of patients with advanced chronic or
serious life-threatening illnesses that are
screened for dyspnea, for those who are
diagnosed with moderate or severe dyspnea, a
documented plan of care to manage dyspnea
exists
Measure 5
NAME:
Discussion of emotional or psychological needs
Definition:
Percentage of seriously ill patients receiving
specialty palliative care in an acute hospital
setting >1 day or patients enrolled in a hospice >7
days with chart documentation of a discussion
regarding emotional or psychological needs
Measure 6
NAME:
Discussion of spiritual/religious concerns
Definition:
Percentage of hospice patients with
documentation in the clinical record of a
discussion of spiritual and religious concerns or
documentation that the patient or caregiver did
not want to discuss these issues
Measure 7
NAME:
Documentation of surrogate
Definition:
Percentage of seriously ill patients receiving
specialty palliative care in an acute hospital
setting >1 day or enrolled in a hospice >7 days
with the name and contact information for the
patient’s surrogate decision-maker in the chart or
documentation that there is no surrogate
Measure 8
NAME:
Treatment preferences
Definition:
Percentage of seriously ill patients receiving
specialty palliative care in an acute care
hospital setting >1 day or enrolled in a
hospice for >7 days with chart documentation
of preferences for life-sustaining treatments
Measure 9
NAME:
Care consistency with documented care preferences
Definition:
If a vulnerable elder has documented treatment
preferences to withhold or withdraw life-sustaining
treatment (e.g., a do-not-resuscitate order, no tube-
feeding, no hospital transfer), then these treatment
preferences should be followed
Measure 10
NAME:
Global measure
Definition:
Patient and/or family assessments of the
quality of care is a key part of measuring
quality for any setting caring for palliative or
hospice patients
Roles for nurses in palliative care
Support patients/family members
on their journey
Limit the impact of symptoms
and side effects (assess routinely
and treat promptly)
Assist patients and families in
coping with the challenges of the
illness, dying and death
Proportion of Patients Expressing
Distress Related to Specific Need Areas
010
2030
4050
60
Phy
sica
l
Soc
ial
Em
otio
nal
Pra
ctical
Finan
cial
Spirit
ual
Two Groups
N=99
N1=97
Providing symptom management:a key role for nurses
Assessment/monitoring
Intervention
Basic intervention
Education
Referral prn
Assessment Model
Documentation
Structure: parameters
assessment
Protocol
Knowledge BasePatient Factors
Assessment: Nurse/Patient Interaction
• Circulation
• Comfort
• Elimination
• Mobility
• Nutrition
• Protective
• Ventilation
Side
effects
unique to
each
protocol
• Disease factors
• Patient look
• Patient
perspective
• Patient concerns
Assessment Guidelines:
Baseline considerations
Recent treatment (surgery, prior chemo, radiation,
biotherapy, hormones)
Previous & current medical conditions
Previous & current surgical problems
Laboratory data (CBC, liver, renal, knowledge of
pregnancy status)
Assessment Guidelines:
Baseline Considerations
Previous experience with health care
Coping styles
Support systems
Financial resources
Social network/cultural beliefs
Assessment Guidelines: ongoing
General Assessment/Expected Questions
Example: Are you having any breathing problems?
Further Assessment (detail gathering of general question)
Example: How long, when does it occur, how long does it last, etc.
General
Assessment
Expected Questions Further Assessment Yes No N/A
Circulation
Lymphedema
Dehydration
Are you having swelling in
hands/arms/legs/feet
Do you notice your shoes or rings
tightening
Are you drinking 8-10 cups of liquid per
day
Any problems with your heart (beating
fast or feeling of pounding in the chest)
Further Assessment
When does swelling occur? For
how long? What strategies have
you used with it? Have you told
your nurse/doctor about it? What
did they say?
How much do you drink? Why?
Is this new? When does it occur?
How long has it been going on?
How long does it last? Does the
doctor know? Have you had a
recent MUGA (drug specific)
General assessment
Tell me about your symptoms
(provoking factors, quality, radiating, severity, relieving
factors, other symptoms, timing triggers, location, new?)
Conduct general assessment
Treatment type. Time since starting, length of time
treatment started,
Other symptoms? When started today? Told could
occur?
Current medication regime
Patient/Family Education
Continuous Process
Should begin with diagnosis
Continue through the illness experience
Primary language
Level of understanding
Readiness to learn/hear
Anxiety levels
Patient/Family Education
Multistep approach
Processes, language & terminology, locations
Cultural fears & anxieties
Personal issues
Support system
Influences in Education
Preconceived ideas
Cultural background
Adult learning style
Educational background
Socioeconomic status
Past coping mechanisms
Patient Expectations
Concerns are addressed
Support
Knowledge
Information
Links
Components of Patient Education
Treatment Plan
Names and actions of the drugs given
Names, reason and schedule of supporting drugs
Potential side effects of drugs
Steps to reduce/eliminate side effects
Provision of written information