Palliativecare.in



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

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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 |R.A (Rheumatic Arthritis) |Paediatric Conditions : |

|Seizure Disorders | | |

|Sickle cell Anemia |Cirrhosis of liver/ Liver failure |HIV/AIDS. |

|HIV/AIDS |Kidney diseases, |Cancer |

|Diabetes Mellitus with complications |Old age |Type I Diabetes |

|Tuberculosis with complications like MDR TB, TB | |Epilepsy or Convulsions |

|Meningitis | |Severe malnutrition |

|Stroke | |Thalassemia/ Sickle Cell Anaemia Perinatal and |

|Heart diseases, | |Neonatal complications |

|Severe respiratory problems | |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

Palliative Care is provided by a Multi – Disciplinary Team

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.

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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 life-limiting 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:

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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

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III. Mouth Care: [pic]

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: [pic]

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:

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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:

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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 |Semi Solid Diet |

|Egg Yolk |Kheer |

|Milk, Lassi |Ragi, Kichadi |

|Soup – Tomato, Spinach, Carrot |Boiled eggs |

|Non Veg Soup |Overcooked meats, chicken , mutton |

|Coconut Water |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.

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4. Psychological & Psychosocial Support in Palliative Care

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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

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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. Respond to Patients feelings:

• Attention to the patient’s non verbal communication

• Appreciation

• Understand and accept them at their level

6. 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: [pic]

• 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: [pic]

• 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

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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.

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• 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 |

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7. Palliative Care Centres in Maharashtra

|Palliative Care Centres |Location |Type of Institution |

|Tata Memorial Center |Parel, Mumbai |Government |

|Govt. Medical College |Nagpur |Government |

|LTMG Hospital, Sion Mumbai (Pediatric and Adult |Mumbai |Government |

|Palliative Care) | | |

|MGM Medical College, Mumbai (Pediatric Palliative |Mumbai |Trust |

|Care) | | |

|Cipla Palliative Care & Training Centre |Warje, Pune |Trust |

|Krishna Institute of Medical Sciences |Karad |Trust/ Private Medical |

| | |College |

|Shanti Avedana Ashram |Bandra,Mumbai |Trust |

|Walawalkar Hospital |Derwan,Chiplun |Trust |

|Snehanchal Hospice |Nagpur |Trust |

|Rashtriya Santh Tukadoji Hospital |Nagpur |Trust |

|Cottage Hospital/Subdistrict Hospital |Jawhar |Government |

|Sub District Hospital |Igatpuri |Government |

|Raheja Hospital |Mumbai |Private |

|Bhakti Vedanta Hospital |Mumbai |Trust |

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Psychological

Physical

Total Care

Social

Spiritual

Family

Doctor

Patient

Rehabilitation

Nurse/

ASHA/ ANM

Social Worker

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