Delivery of Palliative Care: Infrastructure, tools and human resource

Effective implementation of palliative care for people with TB requires proper infrastructure and human resources in the centers providing palliative care. People with TB may come from districts far away from centers of excellence and hence there is also a need for linkages to peripheral centers and provision for continued care in these peripheral centers.

In the ideal case scenario, the following are required for delivering palliative care services, particularly in Centre of Excellence for DR-TB care

1. The team of Palliative Care 
The palliative care team TB is a multidisciplinary team and consists of:
1. Doctors
2. Nurses
3. Medical Social Workers
4. Nutritionists
5. Respiratory Therapists
6. TB Counselors
7. Clinical Psychologists
8. Psychiatrists

The team should receive training in palliative care (at least 30-40 hours). Following the basic training, the team members should also aim to improve their palliative care skills through advanced training courses. A number of online courses in palliative care are available.

However, human resources expected in the above list may not be available in all centers of excellence, and the basic minimum staff expected to be essential for running palliative care services would include

1.Doctors
a.    Clinicians treating people with TB
b.    Publichealth doctors providing programmatic services
i.NTEP MOs
ii.PMDT MOs
2.Nurses
3.Counselors
4.Dieticians
5.Physiotherapists / respiratory therapists
6.TB health visitors / treatment organizers
Since this team would be trained in palliative care, however doing palliative care in addition to other duties, there may be need for supportive services from the state / district palliative care team or a linkage with an NGO / private provider who have greater expertise in palliative care.

At the linked nodal DR TB centers, the component of staff expected to provide continued services for patient would be

1.Doctors,
a.    Clinicians treating TB patients
b.    PMDT MOs
2.Nurses
3.Counselors
4.Dieticians
5.Physiotherapists / respiratory therapists
6.TB health visitors / treatment organizers / Statistical Assistant
At the district DR TB center level DTO, MO DTC, Nurses, TB HVs and counselors will provide continued care to patients referred from the Nodal DR TB centers.

2. Functions of the Palliative Care Team
1.Assessment of palliative care needs of people with TB: The team should assess the people affected by TB in the physical, psychological, social and spiritual domains.
2. Preparation of care plan: Individualized Care Plans (ICP) should be prepared to address the multifaceted needs of people affected by TB and their families. 
3. Provision of palliative care
   a. Correct the correctable - Correctable causes of suffering should be identified and addressed through a multi-disciplinary approach.
   b. Specialist palliative care consultation – For complex palliative care needs a specialist palliative consultation may be done.
4. Documentation and research – The assessment and management done should be properly documented. Contextually relevant research activities should be undertaken.
5. Establishing community linkages - It is important to ensure continuum of care after the patient is discharged and sent home. Hence efforts should be taken to establish linkages with palliative care services available in the patient's locality.
6. Procurement of drugs and equipment required for palliative care e- The team should procure the necessary drugs and equipment required for palliative care and also ensure that the necessary infrastructure is in place.

3. Palliative care Assessment and individualized care plan

Palliative care needs assessment and care plan should be incorporated into the medical records. An additional document will be attached to the treatment card of the patient, which would contain information on assessment done,the individual patient palliative care plan and assessment and monitoring tools to assess progress and response to treatment.The structure of the document is attached in Annexure 1.

4. Infrastructure

Infrastructure requirements follow the principles as that for infection prevention, patient privacy, and quality of life of the patients and caregivers.
●IP care facilities – IP care facilities would be provided as per the NTEP guidelines for Drug sensitive and Drug resistant TB, in concordance with National airborne infection control guidelines
●Adequate open space for recreation, meditation, prayer and counseling.
●A separate place would be designated, with concordance for airborne infection control, for counseling people with TB with privacy.
●Provision for supply of food as per the nutritional needs of the patients, as determined by the dietician and treating doctor.
●Infrastructure should be disabled-friendly with ramps, elevators, toilets etc
●A separate room/private space for imminently dying individuals. If a separate room is not available, privacy should be ensured with screens or curtains.

5. Medications needed

Essential medicines for palliative care according to WHO Essential package of palliative care drugs for people affected by TB and ancillary drugs to manage ADR should be made available. Medications required include drugs for pain control (Paracetamol, Ibuprofen, Diclofenac, Codeine phosphate, Tramadol, Morphine and Gabapentin), drugs for gastrointestinal symptom control (Metoclopramide, Domperidone, Dexamethasone, Bisacodyl, Loperamide, Oral rehydration salts and Ranitidine), materials for wound management (Betadine lotion and ointment, Metronidazole jelly and Hydrogen peroxide), drugs for psychological symptom management (Diazepam, Haloperidol and Amitriptyline), antibiotics and antifungals, nutritional supplements (including high protein and calories food supplements and Iron, vitamin and mineral supplements) and other miscellaneous items (Spirit, Lignocaine jelly, Ethamsylate, Cough suppressants).

6.List of drugs required for palliative care as per WHO Essential drug list

Non-opioids and non-steroidal anti-inflammatory medicines (NSAIMs)
a. Ibuprofen:Oral liquid: 200 mg/5 mL 
    Tablet: 200 mg; 400 mg; 600 mg.
b. Paracetamol:Oral liquid: 125 mg/5 mL
    Suppository: 100 mg.
    Tablet: 250 mg / 500 mg /600 mg.
c. Opioid analgesics
MorphineGranules(slow-release;to mix with water):20-200mg (morphine sulfate)
Injection: 10 mg (morphine hydrochloride ormorphine sulfate) in 1mL ampoule
Oral liquid: 10 mg(morphine hydrochloride or sulfate)/ 5 mL
Tablet(slow release): 10–200mg (morphine hydrochloride orsulfate)
Tablet (immediate release): 10 mg (morphine sulfate)

Medicines for other common symptoms in palliative care

a.Amitriptyline Tablet: 10 mg; 25 mg; 75 mg
b.Cyclizine Injection: 50 mg/ mL
    Tablet: 50 mg
c.Dexamethasone Injection: 4 mg/ mL in 1mL ampoule (as disodium phosphate salt)
    Oral liquid: 2 mg/5 mL
    Tablet: 2 mg; 4 mg
d.Diazepam Injection: 5 mg/mL
Oral liquid: 2 mg/5 mL
Rectal solution: 2.5 mg; 5 mg; 10 mg
    Tablet: 5 mg; 10 mg
e.Docusate sodium Capsule: 100 mg
    Oral liquid: 50 mg/5 mL
f.Fluoxetine Solid oral dosage form: 20 mg (as hydrochloride).
g.Hyoscinehydrobromide Injection: 400 micrograms/ml600 micrograms/mL
    Transdermal patches: 1 mg/72 hours.
h.Lactulose Oral liquid: 3.1–3.7 g/5 ml.
i.Midazolam Injection: 1 mg/ mL; 5 mg/ mL
    Solid oral dosage form: 7.5 mg; 15 mg.
    Oral liquid: 2mg/ mL
j.Ondansetron Injection: 2 mg base/mL in 2mL ampoule (as hydrochloride)
    Oral liquid: 4 mg base/5 mL
    Solid oral dosage form: Eq 4 mg base; Eq 8 mg base.
k.Senna Oral liquid: 7.5 mg/5 mL

7. Equipment

The essential equipment required for palliative care in TB are outlined in the WHO operational handbook2. A summary of the list of equipment from the document is below
List of basic equipment required at Centre for excellence and nodal DR TB centers for palliative care

Copies of assessment tools for palliative care, including tools for assessing severity of cough, dyspnea, pain, malnutrition, etc. should be available, and relevant assessment forms may be attached to the patient treatment card / NTEP treatment record.