Download ASHA Worker Manual in English - Indian Association of Palliative Care

PALLIATIVE CARE PROJECT
Guideline Booklet for
ASHA Workers
In Collaboration with National Rural Health
Mission (N.R.H.M)
Tata Memorial Centre, Mumbai
Children’s Palliative Care Project - IAPC
1. Introduction to Palliative Care
“Palliative Care” is a field of medicine that does not seek to cure the illness but it improves
the quality of life of patients with life limiting illness. It can be delivered at a limiting cost
both in the hospital as well as in the community through home based care and at health
centres. It includes treatment of pain and of other issues like physical, psychological and
spiritual.
Definition of Palliative Care:
“Palliative Care is an approach that improves the quality of life of patients and their
families facing the problem associated with life limiting illnesses 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” (WHO, 1998)
Type of Diseases:
Cancer
Seizure Disorders
Sickle cell Anemia
HIV/AIDS
Diabetes Mellitus with
complications
Tuberculosis with complications
like MDR TB, TB Meningitis
Stroke
Heart diseases,
Severe respiratory problems
R.A (Rheumatic Arthritis)
Cirrhosis of liver/ Liver
failure
Kidney diseases,
Old age
Paediatric Conditions :
HIV/AIDS.
Cancer
Type I Diabetes
Epilepsy or Convulsions
Severe malnutrition
Thalassemia/ Sickle Cell Anaemia
Perinatal and Neonatal
complications
Mental retardation
Various birth defects
Genetic disorders
For patients with such conditions, Palliative Care aims to reduce pain, improve the quality of
life for patients and families, and educate the caregivers for caring for the patient which
includes Physical, Psychological, Social and Spiritual Care, so that the patient is comfortable
and lives with dignity.
Goals of Palliative Care: “To improve the Quality of Life”





Relief from Pain and suffering to enhance comfort by appropriate Symptom Care
To assess the Physical, Psychological, Social and Spiritual needs of the patient and
provide the necessary intervention
To help the patient to live a normal life
To give moral support to the family and enhance coping to accept the illness
To provide bereavement support to the family
Palliative Care:









Provides relief from pain and other distressing symptoms
Affirms life and regards dying as a normal process
Intends neither to hasten or postpone death
Integrates the psychological and spiritual aspects of patient care
Offers a support system to help patients live as actively as possible until death
Offers a support system to help the family cope during the patients illness and in their
own bereavement
Uses a team approach to address the needs of patients and their families, including
bereavement counselling, if indicated
Will enhance quality of life, and may also positively influence the course of illness
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 better understand and manage distressing clinical complications
Psychological
Physical
Total Care
Social
Spiritual
Palliative Care is provided by a Multi – Disciplinary Team
Family
Doctor
Patient
Rehabilitation
Social
Worker
Nurse/
ASHA/
ANM
Palliative Care: Disease Trajectory
Palliative Care begins at the time of Diagnosis and is provided even till bereavement. It not
only disease specific or symptom oriented but provides psychosocial and supportive care to
the patient and families.
2. Children’s Palliative Care
“Palliative care for children is the active, total care of the child’s body, mind and spirit, and
also involves giving care to the family. It begins when the illness is diagnosed and continues
regardless of whether a child receives treatment directed at the disease. Health providers
must evaluate and alleviate a child’s physical, psychological and social distress. Effective
palliative care requires a broad multidisciplinary approach that includes the family and makes
use of available community resources; it can be successfully implemented even if resources
are limited. It can be provided in tertiary care facilities, in community health centres, and in
children’s homes.” WHO 2000
Life Limiting Conditions:
Life-limiting conditions are those for which there is no reasonable hope of cure and from
which children or young people will die. Some of these conditions cause progressive
deterioration rendering the child increasingly dependent on parents and care givers.
Life Threatening Conditions:
Life-threatening conditions are those for which curative treatment may be feasible but can
fail, such as children with cancer. Children in long-term remission or following successful
curative treatment are not included.
Life-threatening and life-limiting conditions can be classified into 4 groups
(ACT – Together for Short Lives)
Group 1: Life-threatening conditions for which curative treatment may be feasible but can
fail. Where access to palliative care services may be necessary when treatment fails. Children
in long term remission or following successful curative treatment are not included.
(Examples: cancer, irreversible organ failures of heart, liver, and kidney.)
Group 2: Conditions where premature death is inevitable, where there may be long periods
of intensive treatment aimed at prolonging life and allowing participation in normal
activities.
(Example: cystic fibrosis.)
Group 3: Progressive conditions without curative treatment options, where treatment is
exclusively palliative and may commonly extend over many years.
(Examples: muscular dystrophy, Batten disease, mucopolysaccharidoses.)
Group 4: Irreversible but non-progressive conditions causing severe disability leading to
susceptibility to health complications and likelihood of premature death.
(Examples: severe cerebral palsy, multiple disabilities such as following brain or spinal cord
injury.)
In our settings, we come across with numerous conditions which affect children and their families.
They are congenital disorders, metabolic disorders, Cancer HIV, Thalassemia and other
haematological disorders, Organ failure etc.
Effective palliative care requires a broad multidisciplinary approach that includes the family and
makes use of available community resources. It can be successfully implemented even if resources are
limited. It can be provided in tertiary care facilities, in community health centres and even in child's
home. It extends throughout the continuum of the care.
Childhood is considered to begin from the perinatal and neonatal period until 18 years of age.
These conditions prevent children from enjoying the possible quality of life that would normally be
enjoyed by children. The conditions bring with them pain, discomfort, medications, investigations,
hospitalization, and emotional, psychological and social challenges. The families of these children
also face immense emotional, psychological and social challenges as they cope with taking care of the
sick child and coming to terms with their own feelings like sadness, helplessness and anxiety.
Important aspects of Paediatric Palliative Care:
Communication with Children:
Many health care workers find it difficult to communicate with children and then they avoid it.
Avoidance is a message itself. By talking we may discover what children know and do not know and
then we can help by providing needed information, comfort and understanding. Children and parents
tend to protect each other from being upset by avoiding difficult discussions. This means that at times
the child can become emotionally isolated. Good communication helps children to become involved
in their own care management and improves adherence to treatment. Open communication with
children and their families improves professional job satisfaction and reduces burnout.
Communication helps us to elicit useful information so that we can diagnose the issues.
Play:
Play is the single most important way that children learn about, grow confident with and manage the
stresses of living in their world, providing developmental stimulation, distraction, exploration,
socialisation and entertainment. As a result of their illness and circumstances, children with lifelimiting illnesses are more vulnerable to developing learning disabilities and learning problems.
Because of their poor health and institutionalization, children with life-limiting illnesses are more
likely than other children to miss out on play opportunities even though they need play to help them
cope and come to terms with their illness. Play encourages physical, social and emotional
development, thinking and language development. It promotes the young child’s understanding of
concepts
3. Common Symptoms and their Management
1. Pain:
Patients are scared about their disease. It is important to remove the anxiety and fear
about the disease as well as relieve them from the associated pain and symptoms. Pain
and symptoms can be controlled if patients take the medications on time and in the right
dosage.
Pain is not only physical, but can also be psychological, social or spiritual. Hence it is
necessary to talk to the patient and the family.
Relief from Pain:
There are pain symptoms in each of the disease conditions, and the symptoms needs to be
assessed accordingly so that the patient is comfortable



Each patient has different symptoms
Symptoms depend on the type of the illness
Every symptom has different medication
WHO ANALGESIC LADDER:
1. Mild Pain: Paracetamol/ Diclophenac
2. Moderate Pain: Codeine/ Narcogen Forte/ Tramadol/ Propoxyphene
3. Severe Pain: Morphine/ Fentanyl Patch
2. Constipation:
Constipation occurs because of a number of medications or due to alterations in the diet.
Patients should be advised:
 Easily digestible food- frequently and on time
 Green leafy vegetables
 Liquid Diet – Water/ Lime Juice/ Coconut water/ Buttermilk
 Laxatives
 Enema
Medications: Dulcolax, Suppositories, Cremaffin Plus
3. Nausea & Vomitting:
Nausea and vomiting occurs due to the illness or the medications. It is necessary to
consult the doctor and take the right medication for control of these symptoms so that
the patient is comfortable.
Medications: Perinorm, Domstal, Haloperidol (Metaclopromide)
4. Cough:
Cough is most prominent in patients with lung diseases.
 Teach the patient to sit upright and cough out expectoration
 Give appropriate expectorants as per doctor’s advice
 Advise warm water
5. Dyspnoea:
For dyspnoea it is necessary to take the following precautions:
 Inhaling cool air
 Deep Breathing exercises
 Meditation
 Exercise
 Sit in open air/ under the fan
 Ventilation - Keep the doors and windows open
 Wipe the face with a wet towel dipped in cold water
Medication: Asthalin (Salbutamol), Deriphylline, Dexamethasone, Morphine
6. Dysphagia: Difficulty in swallowing
In such conditions the patient should be given balanced liquid diet either through
insertion of a Ryle’s Tube through the nose or through Gastrostomy i.e. insertion of a
tube through the stomach.
7. Bleeding:
To control and stop bleeding it is important to apply pressure on the wound with a gauze.
 Use a dark coloured cloth
 At the time of dressing, crush Ethamsylate Tablet and apply on the wound.
E.g. Ethamysylate/ Tramxamic Acid
II. Wound Care:
Wounds can be of two types:
 Cancerous Wounds
 Simple Wounds
Eg. Bed Sore or wounds due to other conditions
Method of Dressing of Cancerous Wounds:
 Assess the wound and wash the wound with Normal Saline (NS) twice a day
 Use of saline made at home to clean the wound
(To make saline at home – In 500 ml of water add a pinch of salt and boil water for 20
minutes. Allow the water to cool and then clean the wound with the ready solution)
If there is pus, water, blood or the wound is foul smelling use Metrogyl Gel for local
application or crush Metrogyl tablet and mix with Lignocaine Jelly and apply to the wound.
If there is a fungating wound with maggots then use turpentine and do the dressing. When
using turpentine keep in mind the following method:
1 portion Turpentine/ 1 portion Saline in the ratio of 1:10 and apply on the wound. If
necessary use a forcep to remove the maggots and then do the dressing.
For Simple Wound Care:
1. Clean the wound with Normal Saline
2. Apply Betadine ointment
The patient at home is looked after by the caregivers, at such times it is important to educate
and teach the caregivers how to look after the patient and do the dressing.
The ASHA worker/ ANM should demonstrate the method of dressing of wound in front of
the caregivers and then observe how the caregivers do the same. This will motivate and
strengthen the caregivers to do the dressing at home.
If the wound is kept clean then the foul smell, maggots, bleeding can be prevented and the
patient can be comfortable.
Precautions:





Keep the materials for cleaning and dressing the wound (Sterilised gauze/ Sticking
bandage/ cloth)
Cover wound with a dry cloth to prevent flies. After use wash and dry in hot sun. If
wound is kept open then flies will further cause infection and wound will fungate.
Always use gloves.
If there is too much bleeding or pain consult the Doctor
Do the dressing as per Doctors advice
III. Mouth Care:
It is necessary to keep the mouth clean to prevent foul breath, pain and ulcers.
 If the patient can bear then give a glass of warm water with a pinch of Baking Soda
and a pinch of Salt every two hours and gargle before and after meals.
 Use of soft toothbrush for brushing
 Use of Mouthwash E.g. Betadine Mouthwash/ Hexidine Mouthwash
IV. Nesogastric Tube Feeding
When patient is not able to swallow or take food through mouth, he is unable to get
proper nutrition. In such conditions it is necessary to give the patient liquid diet through
the nasogastric tube. It is also important to teach the caregivers how to feed the patient
through the feeding tube. The caregivers need to follow the necessary steps while tube
feeding.
Method:
 Use a big syringe for giving feeds
 Make the patient sit upright with back on a pillow or a chair
 Grind or mash the food into liquid feed
 Wash the tube with water before and after feeding
 Don’t push air through the tube.
 If there is a problem inform the ASHA/ ANM and consult a Doctor
Care of the Tube:
 Patient and caregivers should be taught how to finely grind home cooked food
into liquids and feed through the Ryle’s tube.
 Make the patient sit upright when feeding through the Ryle’s tube
 Use a syringe pump for feeding
 Before and after feeding always give water to the patient.
 Wash the Ryle’s tube with warm water with a pinch of baking soda once a week.
 Do not use force if the feed is not going through the Ryle’s tube. Consult a doctor
in such cases.
V. Tracheostomy Care:
Stoma made in the trachea for breathing
 Encourage self care by the patient
 Educate the caregivers
 Cleaning of the tracheostomy, keep covered with a cloth
 Maintain skin care
 Suction
 Humidification of air
 Changing of tie
VI. Sitz Bath:
If patient has Cancer of Cervix or rectum, there may be bleeding or white discharge. In
such cases it is necessary for the patient to take Sitz bath.
Method:
 Put 10 drops of Betadine solution in a tub of warm water (used for bathing)
 Make the patient sit in the tub of water for 15 minutes twice in a day
VII. Medication:
It is important that the patient and the caregivers give the medications to the patient at the
right time and in the correct dosage. It is important to explain and educate the caregivers
on the proper administration of medications.







The type of medication should be explained to the caregiver so that it helps in
lowering the anxiety of the patient and the caregivers
It should be explained as to when and how to take the medicines and the side effects
or allergies.
For drugs like Morphine & Codeine it is important to educate the caregivers on the
dosage as well as to remove associated myths about the medication
Few medications should be taken half an hour before meals so that it increases
appetite and reduces vomiting.
Other medications can be taken after meals
Timing & Dosage – Make a Chart- Before or after meals
For patients on Tube feeding or those who can’t swallow: Crush the tablet and put
through the tube with water
VIII. Back Care:
When there is disease progression the patient is fatigued and there is decreased body
strength and the patient finds it difficult to get up or sit upright. In such conditions the
patient is in lying down position at all the time. Hence it is necessary to take care of the
back of the patient.
Due to continuous lying down position, the skin of the back becomes red and begins to
peel. This results in a wound and develops into a bedsore.
Method:
 Take luke warm water into a bowl and add an antiseptic.
 Sponge the back of the patient
 Apply coconut oil and let it dry
 Apply powder on the back
 Change the position of the patient every two hours and 4 times a day
 Keep the patients clothes and bedding dry.
 Give healthy nutritious food to the patient.
IX. Nutrition:
The proper nutrition helps to maintain the energy level. After the therapies like Radiation and
Chemotherapy and post – surgery, the patient does not feel hungry and may have nausea. In
such cases if he/she is given the food he/she likes then it helps to re-gain the appetite and his
physical and psychological well being.
Liquid Diet
Egg Yolk
Milk, Lassi
Soup – Tomato, Spinach, Carrot
Non Veg Soup
Coconut Water
Semi Solid Diet
Kheer
Ragi, Kichadi
Boiled eggs
Overcooked meats, chicken , mutton
Ice - cream
It is important for the caregivers to understand that as the disease progresses the patient’s
appetite decreases. Caregivers should not force the patient to eat.
It is therefore necessary to give small frequent light meals, liquid foods e.g. Water at regular
intervals instead of heavy meals.
Small frequent meals to be given every 2 – 3 hourly
 Locally available good nutritious food, fruits and vegetables
 The food which the patient likes
 Home made recipes, good presentation of food
 Happy environment
 Dietary supplements
 Semi – Solid or Liquid diets
 Avoid spicy, oily and fatty foods
X. Care of Bedridden Patients:
A bedridden patient has to be cared with following precautions:
 Keep the environment clean
 Prevent bed sores
 Prevent pain in muscles and joints
 Give adequate fluid intake
 Prevent infection, Incontinence of urine/ bowel
 Maintain hygiene
 Check the body temperature
 Check for any impairment in mobility or foot drop, muscle wasting, and
thrombophlebitis and consult a doctor
 Impaired skin integrity which makes skin vulnerable to pressure sore
XI. Rehabilitation:









Restoration of strength and Mobility
Improvement in capacity for self-care
Independence
Exercises
Massage
Changing Patient position every 3 hours
Personal care activities
Educating the Family members
Assistive devices – Wheelchair, walker, prosthesis etc.
4. Psychological & Psychosocial Support in Palliative Care
The patient has the following Psychological and emotional symptoms
 Fear of Pain and Symptoms
 Uncertainty of the future
 Anger and bitterness towards family and relatives
 Change in family dynamics
 Loneliness and anxiety
 Why Me?
 Spiritual Issues – Because of my Past Sin/ Wrongdoing
 Angry with God or No belief in God
 Fear of death and dying
Here it is important to understand and counsel the patient and caregivers. The patient and
caregiver have to be counselled separately.
1. Social Care:
 Associated Social Stigma
 Awareness about Myths & Misconceptions
 Superstitious beliefs regarding the disease
The patient should not be isolated from family or community. Involve the patient in daily
routine activities
 Light activities – cleaning vegetables
 Encourage hobbies – watching TV/ Reading/ Music
 Diversional activities – Yoga/ Meditation
2. Spiritual Care:
 Why Me? Past Sin/ Punishment/ Curse
 Angry on God - No belief in God
 Fear of Death/ Spiritual issues related to life and death
It is important to counsel the patient and caregivers.
3. Communication in Palliative Care
Importance of Communication:
 To maintain trust
 To reduce uncertainty
 To prevent unrealistic expectations


To allow the person to adjust
To prevent a conspiracy of silence
Aim of Communication:
 To remove the fears
 To guide the patient and caregiver
 Psychological Support
There are 2 types of Communication
1. Verbal Communication
2. Non Verbal Communication – Facial expressions, gestures, body language, touch,
tone of voice, medium of expression, relaxed posture, active Listening, maintaining
eye contact, vocabulary
Listening:
Effective Listening:
 Allow the patient to speak
 Many times while speaking the patient remains silent, it is necessary to have patience
 Open ended questions
 Encourage talking, enquire about feelings
 Tolerate silence
 Avoid unnecessary interruption
 Show that we are hearing by verbal and non-verbal means
 Use sensitive prompting, summarizing, clarifying
 Ask questions about mood, fears
 Appropriate use of touch
1. Breaking Bad News:




To reduce the fear and stress
To maintain emotional stability
To allow appropriate time for adjustment
To utilize the available supportive services
When to Break Bad News:
 After the diagnosis is made
 After each therapy completed
 When a new symptom arises
Steps of Breaking Bad News:
1. Getting Started:
 One should know and have the right information about the disease
 Quiet place
 Build Rapport
2. Find out how much the patient knows:
 Find out what and how much the patient knows about the disease
 Establish trust
 Assess concerns
3. How much the Patient wants to know:
 Many a times with too much of information patients are confused
 At such times it is important to provide the required information
4. Share the Information:
 What information the patient need or any new information that the patient requires
 What did the previous doctor tell about your diagnosis and prognosis?
 Do you want to know about your disease?
 Is there somebody else that you will like me to talk to?
 Use the words of the patient
 Explain in simple small steps.
 While sharing use patient’s words
 Give information based on pt’s knowledge.
 Apply slow and steady guidance
 Observe the response
 Give information as small as the pt can tolerate
 Gradually introduce serious prognosis
 Check receptiveness frequently
5.



6.





Respond to Patients feelings:
Attention to the patient’s non verbal communication
Appreciation
Understand and accept them at their level
Planning and Follow Up:
Understand the patient’s problem
Make a list of his/her problem
Make a plan and explain to patient or relative
Involve the patient in decision making process
Summarise and brief
5. Supportive Care Services in Palliative Care
Palliative Care can be provided in the Home/ Hospice/ Hospital
1. Home Care:
 The Home Care team should do a need based assessment of the patient and family
 Assess Family Social Problems/ Family Dynamics/ Caregiver Availability / Care of
Patient/ Family Collusion/ Available Social Support/ Financial
 Caregivers should be educated on looking after the patient at home
 The Home Care team should consist of a
1. Doctor
2. Nurse
3. Social Worker and/ or Volunteer
4. Rehabilitation Team
This gives a basis to assess the needs, issues and problems of the family at large and
further develop a plan for intervention for both the patient and family. Home care aims at
providing comfort and care for the patient through available support system - neighbours
and friends.
2. Hospice Care:
 If there is no caregiver availability or family members are not able to take care or
manage symptoms at home, then the patient can be admitted to a Hospice Care.
 The Hospice Care is a residential facility, care is provided by a multi – disciplinary
team.
 The duration of stay depends on the patient
3. Hospital Care:
 Palliative Care services are available at Hospitals. This includes both In – Patient and
Out Patient facilities. At times patients require more intensive care being identified
and admitted to an in-patient facility. This admission may be short term, allowing the

patient to return home once symptom control is achieved, with continuing care being
provided at home or hospice.
Patients can also get admitted in the Hospital during emergencies, for this the
Palliative Care Dept. makes the necessary provisions for admissions. Consequently
the patient and family is also visited in the ward until further planning.
4. Community Based Model of Care:
The rural outreach programme has been facilitated in collaboration with Govt.
Initiatives, Dept. of Health to mainstream Palliative Care into the Rural Cottage
Hospital and implemented into the Primary Health Centres (PHC’s) working at the
grass root level. This implies:
 Integration of Palliative Care into the existing Public Health systems at grass root
level
 Identification of patients with life limiting conditions and provide support to families
 Training and Education of all cadres of Health Workers
 Networking and strengthening linkages with existing NGO’s, CBO’s for referral of
patients
 Community Mobilisation
The Community team consists of:
1. Doctor or Medical Officer
2. Nurse/ ANM/ ASHA Worker
3. Social Worker/ Outreach Worker/ Para Medical staff
The ASHA workers identify patients in the community and then refer them to the PHC. The
ASHA workers are the intermediary link between the community and the PHC. They play a
significant role in providing information and awareness about the existing health services in
the village and mobilization of the community for medical camps.
The ASHA’s and ANM’s have also been trained in Basic Nursing Assessment and Symptom
Management to provide Palliative Care to patients at basic level. Their role includes Home
visits/ Counselling/ Follow Up and Referrals.
The overall structure and function demonstrates a Community Based Model of Palliative
Care which implies:
 Community Based Interventions
 Empowerment of the local community
 Community participation
 Establishing networks in the community – Local Self Government Institutions/
Panchayats
 Linking to Govt. Scheme and facilities/ Self Help Groups
 Making use of available resources, knowledge and expertise
 Cost effective strategy for community outreach
 Building Awareness
 Capacity building
Community Based Model of Care
RH
PHC
Community
& Village
Importance of Patient and Caregiver Education:
•
•
•
•
•
Patient – Self Care
Care giver to be educated for Management at Home
Empowering the Caregiver
To provide comfort
Control of Symptoms
6. Role of ASHA Workers
ASHA Workers have an important role to play in Palliative Care. As they act as a liason
between the PHC & Community.
•
•
•
•
•
•
•
Patient identification in the community
Provide Information and guidance
Refer to PHC
Follow Up
Educating Caregivers
Counseling
Community Awareness
Kit for ASHA Workers - Essential Drug List
1.
T. Narcogen Forte
2.
T. Combiflam
3.
T. Ethasymlate 500mg
4.
T. Imodium
5.
T. Metoclopramide
6.
Metrogyl Ointment
7.
Betadine ointment
8.
Rolled Bandage
9.
T. Imodium
10.
Sticking tape (White)
11.
Petroleum Jelly
12.
Betadine Solution
13.
Disposable Gloves
14.
1 Marker/ Sketch Pen
7. Palliative Care Centres in Maharashtra
Palliative Care Centres
Location
Tata Memorial Center
Parel, Mumbai
Type of
Institution
Government
Govt. Medical College
Nagpur
Government
LTMG Hospital, Sion Mumbai
(Pediatric and Adult Palliative
Care)
Mumbai
Government
MGM Medical College, Mumbai
(Pediatric Palliative Care)
Mumbai
Trust
Cipla Palliative Care & Training
Centre
Krishna Institute of Medical
Sciences
Warje, Pune
Trust
Karad
Shanti Avedana Ashram
Bandra,Mumbai
Trust/
Private
Medical
College
Trust
Walawalkar Hospital
Derwan,Chiplun
Trust
Snehanchal Hospice
Nagpur
Trust
Rashtriya Santh Tukadoji
Hospital
Cottage Hospital/Subdistrict
Hospital
Nagpur
Trust
Jawhar
Government
Sub District Hospital
Igatpuri
Government
Raheja Hospital
Mumbai
Private
Bhakti Vedanta Hospital
Mumbai
Trust