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 butit improvesthe 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:
CancerSeizure 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
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.
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 andmanage 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
- 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:
- Mild Pain: Paracetamol/ Diclophenac
- Moderate Pain: Codeine/ Narcogen Forte/ Tramadol/ Propoxyphene
- Severe Pain: Morphine/ Fentanyl Patch
- 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
- 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)
- 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
- 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
- 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.
- 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 / Semi Solid DietEgg 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’sappetite decreases. Caregivers should not force the patient to eat.