Palliative Care Manual for People Living with HIV by REDHOT

Palliative Care Manual for People Living with HIV

2009

Table of Contents Introduction

Physical Care

Nutrition, HIV and AIDS

Food Safety and Good Hygiene

Emotional Care

Spiritual Care

Positive Community/Support Groups

Institutions with Supportive & Palliative Care

Treatment HUBS in the Philippines

Introduction

What is Palliative Care? Palliative care is a philosophy of care which combines a range of therapies with the aim of achieving the quality of life for patients and their families who are suffering from life threatening and ultimately incurable illness. Key to this philosophy is the belief that everyone has a right to be treated, and to die with dignity, and that the relief of pain, physical, emotional spiritual and social is a human right and essential to this process.

Definition of Palliative Care The World Health Organization in 2002 defines palliative care as an approach that improves the quality of life of patients and their families facing the problem 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. The guiding principles of palliative care are to: â&#x20AC;˘ provide relief from pain and other distressing symptoms to enhance quality of life; â&#x20AC;˘ integrate the psychological and spiritual aspects of patient care;

Palliative Care Manual for People Living with HIV

• offer support to help patients live as actively as possible; • offer support to help families cope during illness and bereavement; • draw on experience and communication between the patient and health care provider (nurse, physician, family member, etc) to provide the best combination of interventions and medications; • affirm life and regard dying as a normal process; • strive neither to hasten nor postpone death.

Palliative Care versus Hospice Care HOSPICE CARE

PALLIATIVE CARE

Both aims to alleviate symptoms and improve quality of life Designed for patients with life expectancy of 6 months or less

Designed for patients with life threatening illnesses

Offered at the end of life

Offered anytime in the course of the disease

Agrees to forego aggressive treatment and hospitalization

Offered along with curative therapies

Palliative Care – As a Comprehensive Caring Palliative care is an integral part of comprehensive care for patients presenting to the health care system with life limiting illnesses such as HIV / AIDS. • Appreciates that dying, while a normal process is a critical period in the life of the patient and family. • Places a high priority on physical comfort and functional capacity, including, but not limited to expert management of pain and other symptoms. • Provides physical, psychological, social and spiritual support to help the patient and family adapt to the anticipated deterioration associated with advanced, progressive, incurable disease. • Alleviates isolation through a commitment to non-abandonment, ongoing communication and sustaining relationships.

Introduction

• Assists with issues of life review, life completion and life closure. • Extends support beyond the lifespan of the patient to assist the family in their bereavement.

Focus of Palliative Care In the past, we conceived palliative care was separate from curative care, and only happened after all treatment options had failed. However, Palliative care should be more dynamic and integrated addressing the changing needs of the patient throughout the course of the disease. Palliative care and disease-specific treatment should be integrated throughout the course of chronic, life-limiting illness, rather than being divided into two completely disconnected treatment approaches. • Starts from the point of diagnosis and until death, and continues through bereavement, helping families cope with their loss. • Based on the principle of client- and family-centered care. • Assessment focuses on determining the needs of the client— whether physical, social, emotional, or spiritual—and developing a plan with the client and his or her family in how to address the problems identified.

Palliative Care Manual for People Living with HIV

Palliative Care: HIV and AIDS Care For people living with HIV, palliative care is vital in the treatment it includes interventions that respond to the physical, emotional, psychosocial, spiritual, and bereavement needs of patients with HIV/AIDS and their families; from the time of diagnosis, through final stages of disease and death. Anti-retroviral therapy, while not curative, nevertheless prolongs life for considerable periods of time and restores quality of life. Integrating palliative treatment with HIV treatment and care provides the patient and family with holistic care, thus optimising quality of life. It is described as: • • • • • •

Integrated with disease-modifying therapies Interdisciplinary approach Patient & family-centered Focus on quality of life Multidimensional focus—physical, emotional, social, spiritual Collaboration with patient to develop care goals

A wide range of palliative care is needed for people living with HIV and AIDS including: • Pain relief • Treatment of other symptoms such as nausea, weakness and fatigue • Psychological support for psychological problems • Spiritual support and help with preparation for death • Support for families and carers- help with nursing infection control and psychological support. Helping patients to achieve a good quality of life at the end of life requires attention to the four quadrants of palliative care namely: • • • •

Physical Intellectual ( knowledge base ) Emotional Spiritual

REFERENCES:

Palliative Care for People Living with HIV/AIDS Clinical Protocol for the WHO European Region WHO 2006 An Overview of Palliative Nursing Care AJN May 2002 Vol. 102, No. 5 AIDS Palliative Care UNAIDS Technical Update October 2000

Physical5 Care Introduction

Pain management, symptom management, and comfort care are fundamental to good palliative care in any setting. Symptom control and supportive therapies are necessary throughout a patientâ&#x20AC;&#x2122;s illness, although the proportion of palliative care services varies with the patientsâ&#x20AC;&#x2122; trajectory of illness and the setting in which they receive care. Care will aim to control or relieve such symptoms and to maintain as much function and independence as possible. A combination of pharmacological and non-pharmacological therapies should be utilized to manage pain/symptoms. Complementary therapies to consider with regard to pain management include: music therapy, relaxation therapy, massage therapy, aromatherapy, acupuncture, reflexology, energy work, hypnosis, nutritional and other dietary supplements. Common signs and symptoms among PLHIV include: pain, fever, cough, dyspnea, nausea / vomiting, diarrhea, constipation, oral conditions or complaints, pruritus, herpes zoster, bed sores.

Palliative Care Manual for People Living with HIV

PAIN Definition

Pain

Pain, one of the most common symptoms in palliative care, is an unpleasant sensory and emotional experience associated with actual or potential tissue damage. The aim of palliative care is to allow patients to be pain free or for the pain to be sufficiently controlled that it does not interfere with their ability to function or their quality of life. Control of pain in order to improve quality of life is an important aspect of palliative care. However, the approach toward pain management in palliative care is different from those of chronic pain and acute pain management

Types of Pain Determining the type of pain is important as different types of pain respond to different treatments. It also assists in understanding the underlying pathology. Pain can be classified according to whether intact nerves are stimulated, nerve cells have been damaged, or the basis is purely psychological.

NOCICEPTIVE PAIN • Results from stimulation of intact pain receptors (nociceptors) • Two types 1. somatic pain ( skin, bones, muscle tissue) 2. visceral pain ( internal organ , hollow vicera) • responds to opioid and nonopioid

1. Somatic - constant or intermittent • usually gnawing, aching • occasionally cramping • well localized 2. Visceral - constant • aching, squeezing, cramping • poorly localized, occ. referred, occasionally well localized

Physical Care

NOCICEPTIVE PAIN • Results from stimulation of damaged tissue. • responds to opiod and nonopiod

1. Dysesthetic pain • constant burning • occasionally radiates, e.g., post herpetic pain 2. Neuralgic pain • paroxysms of lancinating pain • sharp, shooting pain, e.g. trigeminal neuralgia

Causes of Pain There are many possible causes of pain, in palliative care it is important to establish the cause of pain, as therapy should be directed at the cause wherever possible. The etiology of pain syndromes seen in HIV can be categorized into: directly related to HIV itself, pain related to therapies, related to debilitating disease, and non-related to HIV and therapies:

PAIN SYNDROMES IN HIV AIDS PATIENTS Cause

Example

Pain due to HIV itself

HIV encephalopathy HIV neuropathy HIV myelopathy HIV myopathy

Pain related to the consequences of immunosupression, opportunistic infections, and tumours

Oral pain caused by Kaposi’s sarcoma Genital pain caused by herpes infection Headache caused by cryptococcal meningitis Aphthous ulceration

Pain related to treatment

Antiretrovirals Antivirals Antifungals PCP prophylaxis Chemotherapy (vincristine) Radiation Surgery Procedures (bronchoscopy, biopsies)

Palliative Care Manual for People Living with HIV

Pain related to general debilitating disease

Pressure sores Constipation causing abdominal cramps Immobility causing muscle and joint pain Diffuse skin pain

Pain non related to HIV AIDS

Ischaemic heart disease DM neropathy Disc disease

Pain Assesment Pain is a subjective experience; there is no test to measure pain. Pain is what the patient says it is, and it needs to be addressed adequately in order to improve quality of life. Frequent assessment is recommended to check the response of the patient to the intervention given. A thorough and systematic assessment of pain, including possible etiologies, and the specific nature of pain should be included in pain management. Important characteristics of pain include intensity, type, interference and relief.

Pain Intensity • Use of a 10-point numeric scale is standard, with 0 as no pain and 10 the worst possible pain. It is particularly helpful to use the same scale over time in an individual patient, to monitor any changes on a continuing basis.

0–10 Numeric Pain Intensity Scale

No Pain

Pain Type

Moderate Pain

Worst Possible Pain

• Nociceptive pain may be described as aching, stabbing, deep, dull, pulsating; neuropathic pain may be described as burning, tingling, “pins and needles”, numbness or otherwise abnormal sensations.

Physical Care

• Such characterizations can help guide analgesic choice, especially for suspected neuropathic pain.

Pain Interference • The effect of pain on patients’ functional status • The ability to perform usual daily activities and emotional state should also be documented.

Pain Relief • Conditions or interventions which increase or decrease pain should be elicited.

Pain Location • To document the location of pain it is helpful to illustrate and draw the pain on a body diagram

Pain Management A. Pharmacological Pain Management The aims of treatment for chronic pain are: • Prompt relief of pain • Prevention of recurrence The WHO guidelines for pain management include: • By mouth - Best route unless patient cannot tolerate medicines orally - Alternative could be intramuscular or intravenous. • By the clock - Analgesics should be given according to the clock (i.e., at regular intervals). - Analgesics are given according to a strict schedule determined by the duration of action, in order to prevent recurrence of pain.

Palliative Care Manual for People Living with HIV

- - -

Analgesics for chronic pain should never be given ‘PRN’ (as required). It is important to give the next dose before recurrence of pain. If pain is allowed to resurface, higher doses of analgesics will be needed to suppress the pain and it will subsequently be more difficult to control.

• By the ladder - The choice of analgesic should be guided by the WHO three-step analgesic ladder. - The three steps of the ladder represent mild, moderate, and severe pain The WHO Pain Ladder (see Box 4.1), while not yet validated in AIDS, has been recommended by clinical authorities in the fields of pain management and AIDS (Schofferman, 1990; Griffin, 1994).

STEP 3

STEP

STEP 1

Aspirin or Paracetamol If they do not relieve the pain Move to step 2

Morphine with or without co-analgesia:

Codeine or Dihydrocodeine With or without NSAIDS (Ibuprofen or Indomethacin )

With or without NSAIDS (Ibuprofen or Indomethacin) Other strong opiod analgesics include Fetanyl

If they do not relieve the pain Moveto step 3

If pain still uncontrollable refer to a SPECIALIST.

NOTE: • Administer analgesics orally or (assuming no history of rectal abscesses, rectal infection, etc.) rectally. Intramuscular pain management, though sometimes required for severe pain not responding to oral regimens, can be painful in itself and may pose a risk of infection.

Physical Care

• Tailor the analgesic regimen to patterns of sleep, i.e. if possible do not awaken the patient to give pain medication. • Start with a low dose and increase gradually until the patient is comfortable. • While aspirin can be effective in controlling mild-to-moderate pain, care should be taken in using it due to the increased bleeding tendencies of PLWHA, especially in patients with clinically significant liver disease. Paracetamol may also be problematic in patients with active liver disease and should be used cautiously, generally not exceeding 2 g/day in such patients.

B. Non pharmaceutical methods to control pain Physical, psychologic and neurosurgical procedures are proven useful in management of HV AIDS pain. PHYSICAL THERAPIES • Bed rest • Simple exercise program • Application of cold packs • Acupuncture PSYCHOLOGICAL THERAPIES • Hypnosis • Relaxation therapies, Imagery • Patient education NEUROSURGICAL PROCEDURES • Nerve blocks • Cordotomy • Epidural administration of analgesics.

Potential Side-Effects of Treatment General • Nausea • Constipation • Somnolence • Dry Mouth (Xerostomia) • Pruritus

Neurotoxic • Myoclonus • Hyperalgesia / Allodynia • Delirium • Hallucinations • Cognitive Impairment

Palliative Care Manual for People Living with HIV

FEVER Definition

FEVER

Fever is an elevation of body’s temperature that exceeds the normal daily variation and occurs in conjunction with an increase in the hypothalamic set point. It is also defined as a rise of body temperature above the normal whether a natural response (as to infection) or artificially induced for therapeutic reasons. It is an abnormal bodily state characterized by increased production of heat associated with accelerated heart action and pulse, and systemic debility with weakness, loss of appetite, and thirst. Fever and sweats or both are frequent causes of suffering and poor quality of life in people living with HIV (PLHIV). Etiologies of fever include infection, HIV associated malignancies, side effects of drugs (e.g. cotrimoxazole, abacavir and other antiretrovirals, ) hormonal dysfunction and auto-immune disorders. Though fever is usually accompanied by sweating, both symptoms can occur independently of each other.

Assessment of Fever Assessment of fever requires careful history taking, medication review, and a physical examination that includes all major body systems. • The best way to check temperature is by using a thermometer ( Fever > 38°c )

Management of Fever • Assess and treat cause. • May give anti-pyretics such as Paracetamol 500mg/tab one tab every 4 hrs • NSAIDS are particularly helpful in patients with fevers related to neoplasms. • Make sure the patient remains hydrated • Non pharmacologic therapy - diluted tea or fruit juice frequently. - Use physical methods like wet compresses or ice packs.

Physical Care

COUGH Coughing may result from pulmonary infection with secretion production, chronic bronchitis, bronchospasm, tumors, restrictive lung disease aspiration, postnasal drip, drugs like ACE-inhibitors, esophageal reflux or inhaled irritants.

Assessment of Cough (It is important to record all data) • number and quality of respirations (deep, shallow, labored?) • quality of shortness of breath (on exertion or while at rest?) • sputum quality (green-brown, thin-clear, blood-tinged?) • anxiety level • ability to perform activities of daily living (ADL) • breath sounds (crackles or rales, wheezing, reduced breath sounds?)

Management of Cough a. Cough with thick sputum • Nebulize with saline water • If more than 30 ml/day, try expiratory technique (“huffing”) with postural drainage. • Avoid tracheal suction, which is very distressing to the patient b. Non-productive cough • Butamirate Citrate ( 1 tab three times a day ) • Antitussive drugs (Codeine 5–10 mg QID ) • Oral morphine (2.5–5 mg) as long as needed (try to reduce after one week) • Butamirate citrate 1 ta three times a day. c. For cough secondary to Brochospasm • Responds to nebulization using bronchodilators ( Salbutamol/ Ipatropium Bromide )

COUGH

Definition

Palliative Care Manual for People Living with HIV

d. Simple cough • Use local soothing remedies, such as honey, lemon or steam (plain or with eucalyptus). • May take Carbocisteine 500mg/tab 1 tab three times a day for 5 days If symptoms will persist consult a doctor. • If patient has a new productive cough for more than two weeks, it may be tuberculosis. Arrange with health worker to send three sputum samples for examination for TB. In addition to treatment given by a health worker e. Other simple recommendations • Help the patient into the best position to ease breathing – usually sitting up. • Leaning slightly forward and resting arms on a table may help. • Use extra pillows or some back support. • Proper ventilation by opening windows to allow in fresh air. • Increase hydration by giving patient water frequently to loosen sputum. f. For safe handling and disposal of sputum • Handle with care to avoid spreading infection. • Use a tin for spitting and cover it. • Empty the container in the toilet and wash the tin with a detergent or clean with boiled water.

DYSPNEA DYSPNEA

Definition It is a general term that describes a subjective sensation of “uncomfortable awareness of breathing”. Patients’ describe these distressing symptoms such as: • • • • • •

Chest tightness Shortness of breath Air hunger Smothering Suffocation Unable to get enough air

Physical Care

Common causes of cough and difficulty of breathing • • • • • •

Pulmonary Infections (e.g.Tuberculosis, Pneumonia) Pulmonary Malignancies Pleural Effusions Congestive heart failure Anemia Metabolic abnormalities

Assessment • It is helpful to ask patients specifically about coughing shortness of breath. ( duration, pattern, frequency and precipitating / aggravating factors ) • Associated signs and symptoms are essential in history taking. • Importance of asking patient how they feel and physical examination is important in assessment.

Management Palliative care aims to relieve the discomfort associated with shortness of breath. The following are steps in the treatment of dyspnea: • Treat the underlying cause. • General symptomatic measures Supplemental oxygen • Other medications Include Bronchodilators, as needed with or without regular doses may be helpful if there is a significant obstructive component. • Cough suppressants such as dextromethorphan 30 mg q4h po can be useful for a persistent dry cough, and expectorants can help ease dyspnea associated with a productive cough • Sedation is very rarely necessary. Consult a physician if you are considering it. • Non-pharmacologic - Positioning is critical for comfort and is usually determined by patient’s preference. - Bed rest, good oral hygiene, and increased ventilation are all easy measures to decrease perception of dyspnea.

Palliative Care Manual for People Living with HIV

- Distraction therapy, relaxation exercises and breathing control techniques can be very helpful, especially if there is a significant anxiety component.

NAUSEA / VOMITING

NOTE: Consult physician if dyspnea is not relieved for additional medications such as antibiotics, steroids, antihistamines, and diuretics.

NAUSEA / VOMITING Definition • OIs, medications, and digestion issues commonly cause nausea/ vomiting in PLHA. • Persistent vomiting can lead to dehydration and electrolyte imbalances.

Assessment • • • • •

frequency, amount, and character of the vomit abdominal distention or tenderness ability to tolerate food/drink hydration status nutritional status

In chronic nausea • Obtain a history of aggravating and alleviating factors, onset and duration, frequency and description of emesis. Assess the regularity of bowel movements. • Review drugs such as opioids, SSRIs and some antibiotics cause nausea.

Management • Management of nausea and vomiting is based on two approaches: one correcting the underlying cause of the nausea and vomiting and second utilizing medical agents to alleviate the symptoms.

Physical Care

• Pharmacologic - - - -

Metoclopromide 10 mg every 4–8 hours Cetirizine 10 mg OD Hydroxyzine 25–50 mg three or four Ondansetron 8 mg OD or BID

• Nonpharmacologic - - - - - - -

Maintain good oral hygiene Seek foods the patient likes that cause less nausea. Have the patient drink frequently and slowly. Eat/drink smaller volume meals at more regular intervals. Eat odorless foods: toast, crackers, clear soup, potatoes. Avoid hot, spicy, strong-smelling, sweet, and greasy foods. Sit up when eating and avoid lying flat for 20 minutes after eating.

• Seek consult from trained health worker for the following: - - -

vomiting more than once a day associated with abdominal pains (+) signs of dehydration: u dry tongue u passing little urine

DIARRHEA Diarrhea is the most common gastrointestinal symptom in HIV infection /AIDS condition. It is defined as passage of abnormally liquid or unformed stool at an increased frequency. Because of fundamental importance of duration to diagnostic considerations diarrhea may be further defined as: • Acute - if less than 2 weeks • Persistent - if 2-4 weeks • Chronic - if more than 4 weeks

DIARRHEA

Definition

Palliative Care Manual for People Living with HIV

Assessment In evaluating a patient with diarrhea, it is essential to determine the etiology through careful history taking. Questions to be asked are the following: 1. 2. 3. 4. 5.

How long is the diarrhea (Acute, Persistent or Chronic) Any history of travel recently? Describe the character of the diarrhea (volume, consistency, frequency bloody, mucoid) Any associated signs / symptoms? (abdominal pain, fever ) What are your dietary practices?

An assessment of the state of hydration is essential in the management of persons with chronic diarrhea.

ASSESSMENT OF DEHYDRATION IN ADULTS Clinical Features

DEHYDRATION Moderate

Mild

Severe

General condition

Weak

Restless, irritable, cold sweaty

Pulse

Normal

Slight tachycardia

Rapid feeble

Repiration

Normal

Deep and rapid

Skin elasticity Normal

Pinch retracts slowly Pinch retracts slowly

Eyes

Normal

Sunken

Deeply sunken

Mucous membranes

Slightly dry

Dry

Very dry

Urine flow

Normal amount Urine Dark

Reduced in amount ; amber in color

No urine bladder empty

Management • If specific cause of diarrhea is identifiable, treatment should be to correct the underlying cause. • For symptom control antimotility agents such as Loperamide or Diphenoxylate may be tried initially.

Physical Care

• Non- pharmacologic - Encourage the patient to drink plenty of fluids to replace lost water (given in small amounts, frequently). - Increase frequency of small amounts of food intake, such as rice soup, porridge, ORS, bananas, other soups. - Avoid fatty foods and milk and chocolate. - Special care for rectal area after the person has passed stool, clean with toilet paper or soft tissue paper; - If the patient feels pain when passing a stool, apply petroleum jelly around the anal area. • Seek consult to a physician for any of the following: - vomiting with fever - blood in stools - diarrhoea for more than 5 days - increasing weakness - broken skin around the rectal area - perianal ulcers.

CONSTIPATION Constipation refers to persistent, difficult, infrequent or seemingly incomplete defecation. It is also defined as a frequency of bowel movement less than 3 times a week associated with subjective symptoms such as straining, lower abdominal fullness and hard stools must also be considered when making a diagnosis.

Common causes of constipation • Poor oral intake or dehydration. • Malnutrition: autonomic neuropathy related to the anorexia/ cachexia/ asthenia syndrome of advanced cancer. • Drugs: opioids, anticholinergic drugs, diuretics, iron, etc. • Reduced physical activity. • Abdominal tumors. • Reduced colonic mobility secondary to • Hypokalemia, hypercalcemia

CONSTIPATION

Definition

Palliative Care Manual for People Living with HIV

Management Mild Constipation • Increasing dietary fiber ( dietary changes, or supplemental fiber) • Increasing fluid intake

Severe constipation • • • •

Stimulant laxatives Emollient laxatives Hyperosmolar agents Saline laxatives

Agents to Relieve Constipation DRUG CLASS

DRUG AND DOSAGE

a. Stimulant Laxatives - increase intestinal motility

- Bisacodyl 5-10mg daily - Senna 17.2 mg at bedtime

b. Emollient laxatives - penetrates and softens the stool

- Mineral oil - Docussate 200-800mg a day in divided doses

c. Osmotic laxatives - contains non-absorbable sugars that acts as osmotic agents

- Lactulose 15-30 ml daily - Sorbitol 70% 15-30 ml daily

d. Saline laxatives - exert as an osmotic effect and increases intraluminal water content

- Doccusate salts

Physical Care

Definition PLHIV experience many different conditions involving the mouth and the throat. While some problems may be similar to normal people, lack of a competent immune system may require a more aggressive approach in treatment. These oral conditions may interfere with eating and cause increased weight loss among PLHIV.

The major signs of these conditions are: • complaints of burning in the mouth, especially when eating salty or spicy foods or drinking acidic beverages • altered taste in mouth • decreased appetite • difficulty swallowing (dysphagia) - sign of esophageal candidiasis • discomfort or pain with swallowing (odynophagia) - sign of esophageal candidiasis, mouth ulcers • swelling/pain in gums • tooth decay/loss

ORAL CONDITION Caries

PROBLEM

- dry mouth - Abscess Oral Candidiasis - Oral infection - Angular cheilitis Recurrent aphthous ulcers - Minor / Major lesions Recurrent herpes simplex - Lesions present Periodontal disease

- Gingivitis - Necrotizing ulcerative periodontitis

Note: Candidiasis can cause mouth pain, dysphagia, retrosternal pain, nausea and vomiting.

• All patients on immunosuppressive drugs such as dexamethasone should be examined regularly for thrush.

ORAL CONDITIONS / COMPLAINTS

Palliative Care Manual for People Living with HIV

Management Non-pharmacologic • Use soft toothbrush to gently scrub teeth tongue, palate and gums. • Rinse mouth with diluted salt water (a pinch of salt in a glass of water) after eating and at bedtime (usually 3–4 times daily). • Avoid mouthwashes that contain alcohol • Topical anaesthetics can provide some relief. • Soft foods may decrease discomfort. Textured foods and fluids may be swallowed more easily. • Avoid very hot, cold or spicy foods. • Ensure dentures are properly fitted. • Use water soluble lip balms or lubricants, rather than petroleum based products, to keep lips moist.

Management of Mouth Ulcers / Pain on Swallowing CONDITION

TREATMENT

Candida (oral thrush) Nystatin suspension swish and gargle 5 times a day Clotrimazole oral troche suck one 5 times a day Fluconazole or Ketoconazole For angular cheilitis: apply topical antifungal cream (such as clotrimazole cream) Aphthous ulcers

Prednisolone applied as crushed grains Dexamethasone solution as mouthwash

Herpes simplex

Aciclovir 400 mg PO 5 times a day

Foul-smelling mouth due to oral cancer or other lesions

Metronidazole mouthwash: crush 2 tablets in water and rinse mouth.

Physical Care

PRURITUS Pruritus is defined as the sensation of itching. It is the most common dermatologic symptom. It can be localized or generalized and is often associated with eosinophilia (increased peripheral eosinophils) Most common skin conditions associated with Pruritus and HIV include: • • • • • • • • •

Xerosis cutis Eczemas Folliculitis Drug eruptions Lichen simplex chronicus / Prurigo nodularis Papular urticaria ( hypersensitivity reaction, insect bite ) Dermatophyte Infections ( tinea ) Intertrigo (candida ) Scabies

Assessment Thorough medical history and complete physical examination will generally guide the diagnosis of skin pruritus. The following Algorithm (adapted from Majors and co-workers) is a simplified approach in the diagnosis of pruritic eruptions based on their morphology.

Are there primary lesions present? Are there intact papules, vesicles, plaques, that have not been manipulated by patient?

YES

YES primary lesions present Are lesions associated with follicles?

PRURITUS

Definition

Palliative Care Manual for People Living with HIV

YES follicles are present. Differential diagnosis flollicultis, acne and rosacea.

If cutaneous lesions are results of scratching or rubbing the skin, the pruritus is either systemic or psychogenic origin.

YES

NO • Papular non-follicular Skin bites, drug interruptions, acne • Scaly papulosquamous eruptions (Eczema, seborrheic dermatitis, psoriasis)

Management General care • Local steroid creams may be useful if inflammation is present in absence of infection (bacterial, fungal or viral). • Antihistamines: - Chlorpheniramine 4–5 mg BID, - Cetirizine 10 mg OD, hydroxyzine 25–50 mg TID; - Diphenhydramine 25–50 mg at bedtime or up to TID, possibly - useful for severe itching.

Physical Care

Definition • Painful cluster of lesions (vesicles) on an erythematous patch of skin in a localized neurodermatomal distribution (the lesions are usually in a limited area, but can be spread by direct contact) • Cause: varicella zoster virus

Patient Susceptibilty • anyone who has had chicken pox (the virus lies dormant after primary infection) • the acute localized reactivation of the virus occurs when a person becomes immuno-compromised • Healthcare workers who are pregnant must not care for patients with herpes zoster.

Assessment • Assess location, extent, and drainage of the active lesions. • Assess patient for pain at the site of the lesions.

Management • Prevent transmission of the virus by avoiding direct contact with the active lesions: use skin and wound precautions (wear gloves and practice strict Hand washing). • Administer pain medication around the clock, as ordered. • Administer antivirals as ordered (famciclovir, valacyclovir, acyclovir, forscarnet). • Keep lesions open to air. • Counsel patient to rest (this is a systemic viral illness) and not to touch lesions.

HERPES ZOSTER

Palliative Care Manual for People Living with HIV

BED SORES

Definition Bedsores are more properly known as pressure ulcers or decubitus ulcers. They aren lesions caused by many factors such as: unrelieved pressure; friction; humidity; shearing forces; temperature; age; continence and medication; to any part of the body, especially portions over bony or cartilaginous areas such as sacrum, elbows, knees, and ankles. There are four pressure ulcer stages are described by the National Pressure Ulcer Advisory Panel they are as follows: Stage I is the most superficial, indicated by non blanchable redness that does not subside after pressure is relieved. This stage is visually similar to reactive hyperemia seen in skin after prolonged application of pressure. • Stage II is damage to the epidermis extending into, but no deeper than, the dermis. In this stage, the ulcer may be referred to as a blister or abrasion. • Stage III involves the full thickness of the skin and may extend into the subcutaneous layer layer. This layer has a relatively poor blood supply and can be difficult to heal. At this stage, there may be undermining damage that makes the 0wound much larger than it may seem on the surface. • Stage IV is the deepest, extending into the muscle, tendon, or even bone. • Unstageable pressure ulcers are covered with dead cells or eschar and wound exudate, so the depth cannot be determined.

MANAGEMENT • If redness, tenderness, warmth, pus or crusts present, assess for fever; if systemically unwell, or if infection extends to muscle, refer to hospital. • Keep area clean and dry at all times

Physical Care

• Adequate antibiotic coverage ( to be given physician ) • Non- steroidal Anti-inflammatory agents to relieve pain as needed. • Local wound care. • Nutritional support, to enhance proper wound healing. • The most important care for a patient with bedsores is the relief of pressure. Preventing Bedsores in Bedridden PLHIV • Help the patient to sit up in a chair from time to time if possible. • Lift patient up in the bed – do not drag patient, as it can break the skin. • Strict turning schedule. Change the patient’s position on the bed often, if possible every 1–2 hrs use pillows or cushions to maintain position. • After bathing, dry skin gently with a soft towel. • Moisturize the skin using oil or lotion. • Massage back, hips, elbows and ankles with petroleum jelly. • If there is leakage of urine or stools, protect the skin with petroleum jelly applied around the genital area, back, hips, ankles and elbows. • When passing urine or stool in bed, the patient should be supported over the bedpan so as to avoid injury and soiling of linen.

Palliative Care Manual for People Living with HIV

REFERENCES: A Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa 2003 Edition AIDS Palliative Care UNAIDS Technical Update October 2000 Palliative Care for People Living with HIV/AIDS Clinical Protocol for the WHO European Region 2006 Nursing care of patients with HIV / AIDS Family Health International (FHI) 2007

Nutrition, HIV and AIDS

Good nutrition is fundamental for achieving and preserving better health. It also keeps the immune system strong helping the body to protect itself from infections and improves quality of life. A well balanced diet is essential to make up for the loss of energy and nutrients caused by infections. Maintaining normal body weight and intervening early in the event of weight loss contribute to keeping a person healthy longer. Providing quality care and support requires addressing the nutritional needs of people with HIV.

Palliative Care Manual for People Living with HIV

The Cycle of HIV and Poor Nutrition The relationship between nutrition and HIV infection is a vicious cycle, similar to the relationship between nutrition and other infections. It causes a disturbance in the body’s metabolism that interferes with the effective use of nutrients, resulting in poor nutrition. Recurrent illnesses like the opportunistic infections cause symptoms such as fever, nausea/vomiting, diarrhea, anorexia or difficulty swallowing, which affect food intake, digestion, and absorption. This further weakens the immune system, increasing susceptibility to opportunistic infections and/or malnutrition, accelerating the progression of the

disease and reducing survival. • Increase nutritional needs • Reduced intake • Rapid loss of nutrients

• Poor nutrition

HIV • More rapid deterioration of health

• Reduce ability to fight infection

Source: A clinical guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa h. 2006

Nutrition care and support helps break this cycle by helping people living with HIV maintain and improve their nutritional status, boost their immune response, manage the frequency and severity of symptoms, and improve their response to antiretroviral therapy and other medical treatment. Effective nutrition interventions can help transform the cycle of HIV and poor nutrition into a constructive link between improved nutritional status and stronger immune response.

Nutrition & HIV

Nutritional Need Met • Good Nutritional Status • Additional energy needs met • Weight regained/ • Consumption of maintained adequate diet; • Nutritional management of NUTRITION symptoms INTERVENTIONS

MET

• Reduced vulnerability to infections • Reduced frequency and duration of OI and slower progression to AIDS

• Strengthened immune system • Improved ability to fight HIV and other infections

Adapted from: Nutrition and HIV/AIDS: A Training Manual for Nurses and Midwives

Effects of Poor Nutrition on HIV Poor nutritional status can affect HIV in the following ways: • Weakened immune system • Increased susceptibility to OIs • Slower healing process • Possibly faster progression of disease • Poorer response to treatment • Despair and worsening depression

Effects of HIV on Nutrition HIV affects nutritional status in three distinct ways, these effects can occur simultaneously in the same person. They are the following: 1. Reduced food consumption • General poor health decreases the appetite. • Mouth and throat infections cause difficulties in eating. • Medication may have side effects such as nausea, vomiting, loss or change of taste, loss of appetite, and diarrhea.

Palliative Care Manual for People Living with HIV

• Some medications, such as ART, can cause metabolic side effects resulting in increased risk for nutrition-related conditions such as heart and bone disease. • Reduced quantity or quality of household food because of inability to work or absenteeism resulting from HIV-related illness or the need to divert money to pay for treatment or other HIV-related expenses 2. Increased energy needs • The body’s response to HIV infection and viral replication uses additional energy. • As the disease progresses and OIs occur, infections and symptoms such as fever further increase energy expenditure. 3. Reduced absorption of nutrients • HIV interferes with the body’s ability to absorb nutrients, an effect that occurs with many infections. • Infections of the gastro-intestinal such as gastroenteritis limit the body’s ability to absorb food. • Nutrients are lost or poorly absorbed if the person has recurrent/chronic diarrhoea, nausea and vomiting.

Nutritional Consequences of HIV In a chronic infection like HIV infection, your body burns more energy (calories). If you are using more than you are bringing in, you may lose weight. Over time, too much weight loss and progressive decline in nutritional status lead to malnutrition. This can be manifested as wasting. Wasting is more likely when one or more of the following factors are present: • • • •

Weight loss ( BMI < 18.5 ) Altered sense of smell or taste, reducing food intake Difficulty with chewing, swallowing, or poor dentition GI problems, such as diarrhea, nausea, vomiting, constipation, indigestion, flatulence, • Abdominal distention, and abdominal pain

Nutrition & HIV

There are two types of malnutrition result in wasting in HIV/AIDS: a. Starvation-related wasting results from voluntary or involuntary reduction in food intake and can be reversed by increasing food intake on recovering from an opportunistic infection (OI). b. Cachexia-related wasting results from alterations in metabolism and responds poorly to increased food intake. What is known about cancer-related cachexia may assist in developing effective interventions in AIDS-related cachexia.

Nutritional Assessment Why do we need nutritional assessments? • To identify the type of nutrition intervention required • To develop an individualized nutrition care plan to support the clinical management of PLHIV before and during antiretroviral therapy

Palliative Care Manual for People Living with HIV

When should a nutrition assessment be conducted? • Soon after an HIV diagnosis for assessment of baseline nutritional status. • Periodically depending on the stage of HIV infection • Asymptomatic PLHIV – one or two times per year - Symptomatic PLHIV – two to six times per year • When initiating or changing antiretroviral therapy • As part of clinical nutrition research or evaluation of populations receiving nutrition interventions What should be included in a comprehensive nutrition assessment? A comprehensive assessment includes a psychosocial and physiological assessment; evaluation of current nutritional status, including symptoms/illness affecting nutritional state, eating patterns and average daily energy and micronutrient intake (dietary parameters), baseline weight and body mass measures and blood tests ( biochemical parameters). However, inclusion of all these components will be dependent on the availability of resources and the skills of the healthcare workers. Proper documentation and accurate record keeping of weights, food intake (frequency and diversity), symptoms, and treatments are essential in the monitoring of patients. Results of the nutrition assessment, including goals and plans, can be recorded using a standard form or as a medical record notation. In a medical record notation, Subjective, Objective, Assessment, Plan (SOAP) is recommended.

S: SUBJECTIVE DATA This includes self-reported data on medical and socioeconomic factors that may contribute to poor nutrition status. They may include : • Medical and physiological: diarrhea, nausea, heartburn; oral/ dental problems; appetite; fatigue; medications; current/ previous medical status and co-morbid conditions; and use of alternative therapies.

Nutrition & HIV

• Psychosocial: smoking; depression; substance use (e.g., illicit drugs, alcohol); and dementia and other psychiatric problems that may impede appetite or the ability to prepare meals. • Living environment: homelessness and access to cooking and/ or storing food. refrigerator; • Financial: poverty and access to food; availability of income and resources to women. • Functional status: the ability to shop for and prepare food. • Cultural: dietary restrictions and habits. • Dietary intake: a diet history should include evaluation of usual intake (quantity and quality of food eaten), current intake, and any perceived changes; food intolerances; and use of vitamins/ supplements.

O: OBJECTIVE DATA This includes measured and verifiable data. (Anthropometric data) • Nutritional evaluations should include an assessment of physical appearance • Functional status and should involve anthropometric (body composition) measurements, including height, weight (current and past), and hip, waist, and mid-upper arm circumferences (MUAC).

A: ASSESSMENT • This is an evaluation of the patient’s current nutritional status • Includes level of malnutrition (for mild, moderate, and severe levels using BMI cut off points, see table A7); • Nutritional problems (e.g., malabsorption and dehydration due to diarrhea) • Amount of weight loss (e.g., 10 percent unintentional weight loss)

P: PLAN • Goals of nutrition intervention may include detailed strategies for management including nutritional counselling.

Palliative Care Manual for People Living with HIV

Healthy and Balanced Nutrition A healthy balanced diet is a key part of any HIV treatment plan. An effective nutritional care and support will improve the quality of life of people living with HIV/AIDS, by: • maintaining body weight and strength; • replacing lost vitamins and minerals; • improving the function of the immune system and the body’s ability to fight infection; • extending the period from infection to the development of the AIDS disease; • improving response to treatment; reducing time and money spent on health care; • keeping HIV-infected people active, allowing them to take care of themselves, their family and children; and • keeping HIV-infected people productive, able to work, grow food and contribute to the income of their families

The goals of nutrition care vary at different stages of HIV disease.

a. WHO Stage 1: • The person with HIV is generally well at this stage, with good performance status. • The intervention include nutrition counselling and education for positive living.

Nutrition & HIV

• Focus nutrition efforts on the following: - - - -

Emphasizing healthy eating, meal planning, and nutritious diet to maintain weight. Educating PLWHA on water and food safety with regard to purchasing, handling, preparing, and storing foods. Promoting physical activity and exercise. Identifying and addressing misinformation or lifestyle issues such as smoking, drinking alcohol, and using recreational drugs, and explaining how these behaviors affect food intake, absorption, and use.

b. WHO Stage 2 • Weight loss of less than 10% of body weight • The intervention includes nutrition counselling and education for positive living plus nutrition management of HIV-related symptoms and medications. • Focus nutrition efforts on: -

Addressing nutrition-related complications such as diarrhea, weight loss, loss of appetite, problems in chewing and swallowing, nausea, and vomiting. Preventing weight loss and potential wasting.

c. WHO Stages 3 and 4: • Weight loss and wasting become serious problems. Associated signs and symptoms such as diarrhoea and vomiting occurs more frequently and for longer periods. • The nutrition intervention is the same with WHO Stage 2 with additional focus nutrition efforts on: - -

Referral to a nutritionist / dietician for advise on special food preparations and food supplements Providing nutrition counselling on simple dietary changes to increase the effectiveness of ART and to help manage the common side effects of ART.

Palliative Care Manual for People Living with HIV

To maintain good nutrition is to consume a complete and balanced meal. This means consuming proper proportions of carbohydrates, proteins and fats. The section below contains some guidelines on healthy and balanced nutrition. These apply to everyone – whether they are infected with HIV or not.

a. Enjoy a variety of foods • Eating a variety of different foods will supply the nutrients that are essential for our bodies. • No single food contains all the nutrients that our bodies need. b. Eat staple foods with every meal • These foods are relatively cheap and supply a good amount of energy and some protein. • They include cereals (such as rice, maize, wheat), starchy roots (such as potatoes, sweet potatoes, cassava and yams) • Other foods must be eaten to provide additional energy, proteins and micronutrients. c. Eat legumes if possible everyday • These foods provide a person with the proteins needed to develop and repair the body and also to build up strong muscles. • They are good sources of vitamins, minerals and fibre and help to keep the immune system active. • Legumes include beans, peas, groundnuts (including peanut butter) and soybeans. d. Eat animal and milk products regularly. • Foods from animals and fish should also be eaten as often as you can afford them. • They supply good-quality proteins, vitamins and minerals and extra energy. • They will help to strengthen muscles and the immune system. • These foods include all forms of meat, poultry (birds), fish, eggs and dairy products such as milk, sour milk, buttermilk, yoghurt and cheese.

Nutrition & HIV

e. Eat vegetables and fruit everyday • Vegetables and fruit are an important part of a healthy and balanced meal. • They supply the vitamins and minerals that keep the body functioning and the immune system strong. • Eat a wide variety as each one provides different vitamins and minerals. A recommended list is provided below. Yellow, orange, red or dark green vegetables

Other fruit vegetables and fruit

Green leafy vegetables (spinach, pumpkin, cassava leaves), green peppers, squash, carrots, yellow peaches, papaya and mangoes

Tomatoes, cabbage, oranges, mandarins, lemons, guavas, mangoes, pineapples, papaya and mangoes

Good sources of vitamin A

Good sources of vitamin C

f. Use fats and oils as well as sugar and sugary foods • Fats, oils and sugar are good sources of energy and can help gain weight. • They also add flavour to food, thereby stimulating appetite. • Fats and oils include butter, lard, margarine, cooking oil (vegetable, coconut and palm oil), cream, mayonnaise and coconut cream. They are also found in avocados, oilseeds (sunflower, groundnut and sesame), fatty meat and fish, curds and cheese. • Sugars and sugary foods include honey, jam, table sugar, cakes and biscuits. • Fats and sugars good sources of energy, but are not rich in other nutrients. Therefore, they should be eaten in addition to other foods, not in place of them. g. Drink plenty of clean and safe water. • A person needs about eight cups of fluid per day. • When it is very hot, while working, sweating or suffering from

Palliative Care Manual for People Living with HIV

diarrhoea, vomiting or fever, a person needs to drink even more to replace the water that has been lost. • Alcoholic drinks remove water from the body and should therefore be taken only in limited amounts. They can also interfere with the action of medicines. • Avoid drinking tea or coffee with a meal, as this can reduce the absorption of iron from the food.

Micronutrient Supplementation When food intake is low, multivitamin and mineral supplements often in the form of pills can help to meet increased requirements. However, these supplements are often not available, and are expensive and leave less money for food. It would therefore be cost effective to provide a good mixed diet whenever possible rather than buy supplements. If supplements are considered necessary, the following are recommended: • Discuss your intake of vitamin and mineral supplements with your physician or nutritionist. • Always take vitamin pills on a full stomach. Be consistent and take them regularly. • Take any vitamin or mineral supplementation according to the advice on the label or physician’s advice. More is NOT better. Taking high doses can cause side effects such as nausea, vomiting, decreased appetite and liver and kidney problems as well as interfere with the immune system. NOTE: Micronutrient supplements can be useful but cannot replace eating a balanced and healthy diet.

Food Safety and Good Hygiene

Proper food safety and hygiene are important for PLHIV because their immune system have already been weakened. Prevention of water- and food-borne disease is crucial in HIV care. Contaminated food and water can causes diarrhea and vomiting, which can further deplete nutrients and decrease absorption. The following are recommendations for food safety.

General • Always drink clean water that has been brought to a rolling boil (10 minutes). • Always wash hands thoroughly before food preparation and eating and after using the bathroom. • Cover all wounds to prevent contamination of food during preparation and handling.

Palliative Care Manual for People Living with HIV

Animal products • Thoroughly cook all animal products (meat, chicken, pork, fish, and eggs). • Avoid raw or soft-boiled eggs or undercooked meat. • Thoroughly clean utensils and surfaces that have been in contact with uncooked foods. (ex chicken) • Cover meat, poultry, and fish with a clear cover or cloth and keep separate from other foods to avoid contamination. Fruits and vegetables • Use clean water to thoroughly wash all fruits and vegetables. • If it is not possible to wash fruits and vegetables properly, remove the skin to avoid contamination. • Avoid eating groundnuts and maize that are moldy, shriveled, or spotted. Food storage and handling • Keep areas where food is prepared free of flies and other insects. • Cover uneaten food to avoid contamination. • Keep hot foods hot and cold foods cold before eating. • If food products have expiration labels, do not eat after the “best before” date has expired. • Store cooked food at most for one day and reheat before eating. • If you have a refrigerator, put all leftover foods in it.

Nutritional Advice for Specific Dietary Problems a. Nausea / Vomiting • Take smaller meals or snacks. • Try cold or chilled foods. • Eat dry toast, crackers and cereals, and soft fruit like bananas. • Get someone else to prepare the food. • Avoid lying down immediately after eating (wait at least 20 minutes). • Replace lost fluid by taking soups, water, juice, and jelly. • Drink lemon juice in hot water; drink ginger root (crush ginger

Food, Safety & Good Hygiene

in cold water, boil in water for 10 minutes; place in covered container; strain ginger and drink liquid). • Avoid caffeine (coffee and tea) and alcohol. • Avoid having an empty stomach — nausea is worse if the stomach is empty

b. Bloatedness / Early fullness • Eat small frequent meals. • Drink fluids but do not drink too much with food. • Avoid foods such as cabbage, beans, onions that create gas in the stomach. • Eat long enough (few hours) before sleeping so food can digest. c. Loss of taste • Use flavour enhancers, salt, spices, herbs and lemon. • Chew food well and move around in the mouth to stimulate receptors d. Poor appetite • Eat whenever and whatever you feel like eating. • Eat smaller, more frequent meals. • Take exercise. • Drink high energy drinks such as milk, maas, yoghurt, and mageu (a traditional sour-milk drink). • Avoid strong-smelling foods e. Constipation Eat: • Regular meals to ensure bulk in the gut. • Include foods that are high in roughage (e.g., raw fruit and vegetables, whole-wheat bread, oats, dried fruit). • Eat stewed/dried prunes • Drink lots of fluids. • Get regular exercise. Avoid: • Laxatives and enemas which cause loss of water and salts • Delaying going to the toilet.

Palliative Care Manual for People Living with HIV

f. Diarrhea Avoid the following foods: • Dairy products • Greasy, high-fat food • Sugar • Food with a laxative effect (e.g., prunes) • Caffeine, alcohol and Nicotine Eat more: • Starchy foods (oatmeal, potatoes, white rice, corn-soya blend, sweet potatoes) • Food rich in fibre (millet, peas, lentils, banana) to help retain fluids • Guava juice and soft fruit and vegetables • Small meals frequently rather than three large meals. • Eggs, chicken, or fish for protein • Boiled or steamed foods, avoiding fried foods g. Body weakness • Let others help you by preparing and bringing food. • Eat fruit and yoghurt.

REFERENCES: Nursing Care of Patients with HIV and AIDS Family Health International (FHI) 2007. A Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa World Health Organization 2006 Nutrition and HIV/AIDS: A Training Manual for Nurses and Midwives ECSAHC, FANTA, and LINKAGES Living well with HIV/AIDS: A manual on nutritional care and support for people living with HIV/AIDS World Health Organization, Food and Agricultural Organization of the United Nations 2002. HIV, Nutrition, and Food: A Practical Guide for Technical Staff and Clinicians Family Health International 2007

Emotional Care

For people living with HIV, their physical health is not the only issue. They are subjected to many stressors brought about by the disease or social issues such as stigma and discrimination. Their moods, emotions and behaviours may be adversely affected. When patients experience emotional symptoms, they may be unable or unwilling to bring them to the attention health care provider. This makes it crucial that care provider must be vigilant and considerate to any changes in mood and behaviour of their patients. It is also important to remember that there is no right or wrong feeling. Patients should be allowed to go through the feeling/emotion for them to move on. “No matter what you are feeling, you have the right to feel that way.” “There are no wrong or right feelings.” “Feelings come and go“ Communication is important to minimize distress. Emotional support may be provided by trained caregivers, family members, neighbours, friends, or fellow patients. Peer support groups are a significant source for strengthening the patient and family members’ capacity to manage problems that cause pain and grief. There are many things you can do to deal with the emotional aspects of having HIV. Some of the most common feelings associated with HIV are discussed below with suggestions on how to cope with these feelings / emotions.

Palliative Care Manual for People Living with HIV

FEAR AND ANXIETY “Anxiety” is a blanket term that covers a wide range of emotional responses and disorders. Anxiety itself is not a mental disorder. Rather, it is a normal emotional response to stress and the perception of danger. The baseline for anxiety is simple fear.

FEAR AND ANXIETY

Fear is instructive and protective: it tells us when we are in danger and prepares us to take action to defend ourselves or retreat to safety. What is generally called anxiety can be likened to an extreme presentation of the normal fear response. Fear and anxiety may be caused by not knowing what to expect after being diagnosed with HIV or not knowing how others will treat you after they find out you have HIV. PLWHA are also afraid of telling people including their family members that they are HIV positive. Anxiety disorders in HIV and AIDS patients range up to 40%. It often coexists with depression and substance abuse. The diagnosis of anxiety is important since anxiety can affect the capacity of the patient to take information, plan ahead, and adhere to any treatment plan.

Common Symptoms of Anxiety • • • • • • • • • • •

excessive worry “keyed-up” or on-edge feelings difficulty concentrating fatigue irritability muscle and/or jaw tension sleep disturbances appetite changes changes in libido increased desire to drink alcohol or use drugs rapid heart rate, sweating, and flushing

Treatment for Anxiety Treatment options for anxiety disorders almost always involve both pharmacotherapy and psychotherapy. Benzodiazepines may be use for short term treatment of symptoms of anxiety. It can be used for a short

Emotional Care

term basis until the patient is able to re-establish coping mechanisms or the patient can learn behavioural techniques to manage symptoms through psychotherapeutic treatment. Benzodiazepines that are helpful in HIV are lorazapem, oxazepam and temezepam as they have short half lives hence less accumulation and side effects. Alprazolam is avoided because it may interact with protease inhibitors. Some Antidepressants, including selective serotonin reuptake inhibitors (SSRIs), are generally used for treatment for anxiety disorders because they are also effective and are not addictive (unlike some anti-anxiety drugs, which can be habit-forming).

Management of Anxiety Treatment and dosages (for adults)

Suggestions for home care

• Counsel on managing anxiety in accordance with the specific situation, teach relaxation techniques, listen carefully and provide emotional support.

• Take time to listen to the patient.

• Self-help based on cognitive behavioural therapy (CBT) principles should be encouraged, or a CBT referral made if available. CBT involves a short course of sessions with a psychologist or psychiatrist to explore the origins and warning signs of depression and learn skills to manage it.

• Soft music or massage may help the patient to relax.

• A selective serotonin reuptake inhibitor (SSRI) is an appropriate firstline pharmacological treatment,

• Discuss the problem in confidence.

• Connect the patient with appropriate support groups. • In case of increasing anxiety or depression, refer to a health care provider.

• A benzodiazepine can provide rapid symptomatic relief from anxiety but because of tolerance and dependence should not be used beyond 2–4 weeks. Palliative Care for People Living with HIV/AIDS Clinical Protocol for the WHO European Region 2006

Palliative Care Manual for People Living with HIV

Group therapy is another excellent way to approach anxiety through psychotherapy. Participation in group therapy allows members to express individual problems and emotional issues in a safe forum, usually facilitated by a mental health professional. Group therapy increases social support through sharing feelings and problems, and has the added benefit of normalizing the patient’s internal experience by showing that others have similar experiences and reactions to stressors; by normalizing the individual’s experience, the group dynamic decreases anxiety. Other forms of intervention to help reduce anxiety includes a daily program of focused relaxation (ex. rhythmic breathing, meditation, or listening to music), physical exertion (ex. yoga, dancing, or cycling, for example), and conscious expression such as journaling, psychotherapy, or group therapy.

Suggestions to decrease anxiety • Educate yourself. Learn as much as you can about HIV and ask doctors for things that are not clear to you. • Talk with friends, family members and health care providers • Join a support group Help others who are in the same situation, this may empower you and lessen your feelings of fear

DEPRESSION

Persistent sadness and anxiety are suggestive of Major Depression. Depressive symptoms increase over the course of HIV illness, particularly after the onset of AIDS. About 5% to 10% of the general population gets depressed. However, rates of depression in people living with HIV are as high as 60%. Depression can lead people to miss doses of their medication. It can increase high-risk behaviours that transmit HIV infection to others. Overall, depression can make HIV disease progress faster. It also interferes with your ability to enjoy life.

Emotional Care

Signs of Depression Diagnosing depression can be challenging because many of the typical somatic symptoms such as fatigue, insomnia and anorexia can be caused by the underlying medical illness. Certain conditions like Hypothyroidism, Electrolyte imbalance can mimic depression and should be excluded. The assessment of depression must focus on the dysphoric mood, hopelessness, helplessness and lack of interest and enjoyment. Although a variety of helpful depression assessment questionnaires and tools exist, the clinical interview is still the gold standard for diagnosis of depression. Common symptoms of depression include the following: • low moods, reduced energy, decreased activity and diminished capacity for enjoyment; • reduced interests and concentration, and marked tiredness after even minimum effort; • disturbed sleep and diminished appetite • reduced sense of self-esteem and self-confidence (even in mild depression), often with some feelings of guilt or worthlessness. If these feelings go on for two weeks or longer, and the patient also has some of the above symptoms, they are probably depressed:

Treatment for Depression Pharmacologic interventions remain the core therapy of depression. The most common anti-depressants used are Selective Serotonin Reuptake Inhibitors, called SSRIs. However, antidepressants may interact with some ARV hence, must be used under the supervision of a psychiatrist who is familiar with your HIV treatment. When taken with PIs particularly Ritonavir or Indinavir, antidepressants may need to be reduced, to avoid increased drug levels which may cause seizures or even coma.

Palliative Care Manual for People Living with HIV

Depression can be treated with lifestyle changes, alternative therapies, and/or with medications. Lifestyle changes can improve depression for some people: • • • • •

Regular exercise Increased exposure to sunlight Stress management Counselling Improved sleep habits

Caution is given to people who are into herbal alternatives. St John’s wort a common herb ingredient is used to treat depression. It interacts with PIs and NNRTIs, leading to low levels of these drugs in the blood and risking the development of drug-resistant HIV. It is thus not recommended for patients taking antiretroviral medications

Treatment

Suggestions for home care

Assess and classify as to suicide • Provide support and counselling. risk, major or minor depression, complications from loss or other • Mobilize family and friends for difficult life events. support, and refer patient to PLWHA support groups or religious • Consult with a psychiatrist for support groups. treatment • Do not leave alone if suicide risk: • Consider whether the condition - Counsel; may be due to effects of - Help patient find a solution if medication or any other sleep disturbed; and, underlying medical problems. - Follow up. Source: Palliative Care for People Living with HIV/AIDS Clinical Protocol for the WHO European Region 2006

The earlier you contact your health care provider, the sooner you can both plan an appropriate strategy for dealing with this very real health issue.

Emotional Care

Anger is a common feeling to have when a person is diagnosed to have HIV. Sometimes this anger can make people more aggressive and behave badly. Care givers should never ignore angry feelings.

ANGER

Ways to Deal with Feelings of Anger Patients should learn how to talk about their feelings with others, such as people in a support group, or with a counsellor, friend, or social worker. • Getting some exercises, being more active --like gardening, walking, or dancing--to relieve some of the tension and angry feelings. • Avoid situations-- involving certain people, places, and events-that caused one to feel angry or stressed out.

Stress is unique and personal to each of us. When stress does occur, it is important to recognize and deal with it. As one gains an understanding about how stress affects oneself, people will come up with their own ideas for coping up with stress. Below are some tips to reduce stress

• Don’t be afraid of stress. Learn to notice it and name it for what it is. • Have a good cry. Science says that tears actually get rid of chemicals in body created by stress! • Do something nice for someone else! • Get a massage from a licensed massage therapist. • Use meditation, and/or creative visualization. • Get plenty of rest. • Take a vacation, whether for 30 minutes, a day, a weekend or more! Do nothing or do something you love and find relaxing.

STRESS

Palliative Care Manual for People Living with HIV

• Exercise or do some physical activity. Move your body! • Simplify your life. Keep your responsibilities and obligations outside work and family to a minimum. • Laugh and have fun. Lighten up and spread it around. • Nurture yourself. Treat yourself to something you like. • Nurture yourself spiritually, in whatever way is meaningful for you. • Remember that you have the power to co-create your life! No matter what the circumstance, you can still have power over the attitude you take towards it.

SUICIDE

SUICIDE Suicide is derived from the Latin word for “self-murder.” It is a fatal act that represents the person’s wish to die. There is a range, however, between thinking about suicide and acting it out. Some persons have ideas of suicide that they will never act on; some plan for days, weeks, or even years before acting; and others take their lives seemingly on impulse, without premeditation. Lost in the definition are intentional misclassifications of the cause of death, accidents of undetermined cause, and so-called chronic suicides, for example, death through alcohol and other substance abuse and consciously poor adherence to medical regimens for addiction, obesity, and hypertension

Definition Suicide is the act of killing oneself. Para-suicide is the suicide attempt. Suicide ideation is the thought of killing oneself. There are two periods when people with HIV are more likely to attempt suicide. The first is when the person is initially diagnosed and suicide may occur as an impulsive response to the emotional turmoil that follows. The second period of high risk occurs late in the course of the disease when the central nervous system complications of AIDS develop.

Emotional Care

Factors which may contribute to suicide risk are: 1. A pre-existing mood disorder (depression, anxiety or mania) 2. A current psychiatric disorder such as schizophrenia or bipolar disorder 3. Presence of other psychosocial stressors, e.g. relationship breakdown 4. Substance use or withdrawal 5. Inadequate pre- and post- test counselling 6. Inadequate support network 7. Discomfort with sexuality and/or gender

Individuals Who Refuse to Talk An individual may refuse to discuss their previous suicide attempt or current thoughts or plans because: a. They may be afraid that they will be prevented from committing suicide b. They may be embarrassed or ashamed about having the suicidal thoughts or about their previous suicide attempt/s c. They may be afraid of being labelled “mentally ill” d. They may be afraid that they will be sent to hospital e. They may doubt the confidentiality of the interview f. They may be oppositional or manipulative The health care provider / care giver can reassure the client of his willingness to help and confidentiality of the interview. It is also important to that the client knows how to contact the health care provider at any time of the day in case s/he changes his or her mind. A follow-up letter to the individual reminding him or her of the offer of help may also be useful.

Suicidal Risk Assessment Guideline This is not a questionnaire in the usual sense. These are guidelines for helping professionals on how to interview persons-at-risk of suicide. As guidelines rather than a ready-to-use questionnaire, many questions would need more exploration and probing in order to preserve the subjective reality of each individual-at-risk.

Palliative Care Manual for People Living with HIV

YES 1. Do you sometimes feel so bad/hopeless/helpless you think about suicide? 2. Follow this up with the following explorations: How often? a. Are you currently thinking of suicide? b. Have you thought how would you do it? 3. Do you have a plan? a. How lethal is the planned method? EXPLORE the perception of the person at risk! 4. Do you have the means? (EXPLORE) 5. Have you decided when you would do it? (EXPLORE) 6. Have you ever tried suicide before? (EXPLORE) If ‘yes’ check whether previous attempt was: a. Impulsive b. Planned c. Carried out using any ‘booster’ such as alcohol/ drugs 7. If you have tried suicide before, what difference, if any, did it make? Write down the client’s answer. Generally any positive change perceived by the client makes the risk higher. 8. Check for symptoms of clinical depression. (EXPLORE) a. Neuro-vegetative symptoms: i. Sleep ii. Appetite iii. Tiredness/lack of energy iv. Agitation/slowing down v. Sex b. Mood and motivation i. Prolonged unhappiness ii. Loss of interest or pleasure iii. Hopeless iv. Helpless

Emotional Care

v. Difficulties performing at work vi. Difficulties carrying out routine activities vii. Withdrawal from friends and social activities Check for somatisation (pains, aches, physical discomfort without any organic cause)

Referral Indications An at a glance risk determination

HIGH RISK 1. Current suicidal thoughts. 2.Client reports feeling of hopelessness. 3.Use of maladaptive coping strategies. 4.Multiple attempts, lethal means used. 5.The attempt was made when others were not present. 6.The client says he/she will try again. 7.The client says he/she wonâ&#x20AC;&#x2122;t try again but canâ&#x20AC;&#x2122;t give a good reason for what is now different. 8.Declining health and limited treatment. 9.Client feels s/he is a burden.

LOW RISK 1.Only one attempt, less lethal means. 2.Client expresses some feelings of hope. 3.Client has well developed coping responses to past crises. 4.The client gives a valid reason for not wanting to repeat the experience, e.g. the pain made her realise that death was not the answer. 5.Single attempt, which was made impulsively. 6.Someone else was informed immediately 7.Client indicates s/he has mixed feelings about suicide. 8. Can provide a good reason why they may not commit now different suicide, e.g. against their religion, will upset the family. 8. Client may express concern s/ he is a burden but feels options suicide would place a greater burden on others.

Palliative Care Manual for People Living with HIV

Next Steps for High Suicide Risk Individuals: 1. Ensure appropriate supervision or hospitalisation for the individual. • Do not leave the individual alone for any length of time. • Refer to a psychiatrist or mental health specialist 2. Family and friends may be able to provide suitable supervision

Next steps for lower suicidal risk individuals: 1. Ensure the individual has immediate 24-hour access to suitable clinical care. • Give the individual a list of contact numbers and provide explicit contingency plans if one or more of the contacts is unavailable. 2. Remove all means of committing suicide. • e. g. guns, pills, chemicals, car (take the keys), knives, rope, other weapons. • If the individual requires medication, ensure he or she only has access to a very small amount. 3. Environmental intervention. • Encourage the client’s active participation in the current situation. • Involve family members in caring for the individual and in structured problem solving. • Encourage a supportive network away from the counsellor (e.g. family, friends, and agencies). • Encourage the use of community resources (e.g. crisis hotlines, police, medical centres). 4. Refer to services as appropriate. 5. Always conduct a follow-up assessment. REFERENCES: Voluntary HIV Counselling and Testing: Manual for Training of Trainers Part I World Health Organization 2004 Health Care Guideline: Palliative Care Second edition May 2008. INSTITUTE FOR CLINICAL SYSTEMS IMPROVEMENT Palliative Care for People Living with HIV/AIDS Clinical Protocol for the WHO European Region 2006

Spiritual Care

Chronic diseases particularly the debilitating illnesses challenge all aspects of the person. A holistic approach to palliative care may help the patient to experience a harmonious balance between the body, mind and spirit.

Definition Spirituality is defined as a personâ&#x20AC;&#x2122;s relationship to a transcendent dimension or something greater than oneâ&#x20AC;&#x2122;s self, such as with a supernatural being, whether known as God, Jesus Christ, Mohammed, Buddha, or simply the Supreme Being. It can also refer to other things like nature, energy, force, belief in the good of all, belief in the importance of family and community. It is a lifelong relationship with that dimension or being which takes on even more meaning in times of illnesses, crisis and when approaching old age and death. Another view and more clinical definition is, Spirituality is recognized as a factor that contributes to health in many persons. It is expressed in an individualâ&#x20AC;&#x2122;s search for ultimate meaning through participation in religion and or belief in God, family, naturalism, rationalism, humanism, and all the arts. All of these factors can influence how patients and health care professional perceive health and illness and how they interact with one another.

Palliative Care Manual for People Living with HIV

People find meaning and purpose in life in the times of suffering varies. For many, existential questions are mainly expressed in a formal religion through belief in a deity, the theology of the religion, the concept of an afterlife, and the rituals and practices of the religion used to express those beliefs. Religion offers a structured means for communicating with the Divine, providing a way of incorporating spiritual beliefs in our everyday life. Spirituality help patients cope with the uncertainty of their illness, instil hope, bring comfort and support from others, and resolve existential concerns, particularly the fear of death.

What is Spiritual Care? Spiritual care is part of palliative care which deals with illness and dying as a journey to discover meaning, value and heal relationships through three steps: reconciliation, orientation and thanksgiving. The basis of spiritual care is compassion, being present to our patients in the midst of suffering / ailment. Our presence and caring connects us to our patients as individuals. This interconnectedness at the level of humanity, provide them hope and comfort. Discussing issues of suffering, spiritual values, and conflict with patients provide them the opportunity to find a sense of resolution and perhaps peacefulness. In chronic illness, healing may be experienced as the acceptance of illness. When medical system fails to alleviate his/ her suffering, a person may begin to look toward spirituality for meaning, purpose, and understanding. A combination of both good clinical-technical care and good spiritual care provides the best chance of healing at any stage of illness.

Measurement of Spirituality Healthcare assessment of spiritual needs entails the gathering of detailed information concerning patientâ&#x20AC;&#x2122;s thoughts and feelings about meaning and purpose of life, love and relationship, trust, hope and strength, forgiveness, expressions of beliefs and values. Puchalski adds â&#x20AC;&#x153;The key element of the spiritual history is listening to what is important to the patient and being truly present to the patient. This is at root of compassionate care giving.â&#x20AC;?

Spiritual Care

There are a few structured methods of assessing spiritual aspects such as FICA (Faith, Importance/influence, Community, Address/apply), and SPIRIT (Spiritual belief system, Personal spirituality, Integration with a spiritual community, Ritualized practices and restrictions, Implications for medical care, and Terminal events planning. Table 1 presents a format provider can use for FICA interview while Table 2 presents a framework for taking a SPIRITual history.

FICA (Faith, Importance, Community, Address) Developed by Dr. Christina Puchalski 1996 FAITH, BELIEF AND MEANING • Do you consider yourself spiritual or religious? • What things do you believe in that give meaning to your life? • If patient, responds NO the physician might as, What gives your life meaning? IMPORTANCE AND INFLUENCE • What importance does your faith or belief have in your life? • Have your beliefs influenced you in how you handle stress? • Do you have specific beliefs that might influence your health decisions? COMMUNITY • Are you a part of a spiritual or religious community? • Is this of support to you and how? • Is there a group of people you really love or who are important to you? Communities such as churches, temples and mosques can serve as a strong support system. ADDRESS / ACTION IN CARE • How should the healthcare provider address these issues in your health care?

FICA

FICA (Faith, Importance, Community, Address)

Palliative Care Manual for People Living with HIV

SPIRITUALITY

SPIRITuality S—spiritual belief system • Do you have a formal religious affiliation? Can you describe this? • Do you have a spiritual life that is important to you? • What is your clearest sense of the meaning of your life at this time?

P—personal spirituality • Describe the beliefs and practices of your religion that you personally accept. • Describe those beliefs and practices that you do not accept or follow. • In what ways is your spirituality/religion meaningful for you? • How is your spirituality/religion important to you in daily life?

I—integration with a spiritual community • Do you belong to any religious or spiritual groups or communities? • How do you participate in this group/community? What is your role? • What importance does this group have for you? • In what ways is this group a source of support for you? • What types of support and help does or could this group provide for you in dealing with health issues?

R - ritualized practices and restrictions • What specific practices do you carry out as part of your religious and spiritual life (e.g. prayer, meditation, service, etc.) • What lifestyle activities or practices does your religion encourage, discourage or forbid? • What meaning do these practices and restrictions have for you? To what extent have you followed these guidelines?

Spiritual Care

I—implications for medical care • Are there specific elements of medical care that your religion discourages or forbids? To what extent have you followed these guidelines? • What aspects of your religion/spirituality would you like to keep in mind as I care for you? • What knowledge or understanding would strengthen our relationship as physician and patient? • Are there barriers to our relationship based upon religious or spiritual issues? • Would you like to discuss religious or spiritual implications of health care?

T—terminal events planning • Are there particular aspects of medical care that you wish to forgo or have withheld because of your religion/spirituality? • Are there religious or spiritual practices or rituals that you would like to have available in the hospital or at home? • Are there religious or spiritual practices that you wish to plan for at the time of death, or following death? • From what sources do you draw strength in order to cope with this illness? • For what in your life do you still feel gratitude even though ill? • When you are afraid or in pain, how do you find comfort? • As we plan for your medical care near the end of life, in what ways will your religion and spirituality influence your decisions?

The health care provider plays an important role in supporting a patient’s exploration of these issues by taking good spiritual history. One can choose which tool is appropriate to help you understand their spiritual concerns. Examination of patients’ physical functioning provides valuable information for understanding their spiritual component. The assessment data may serve as a useful tool in determining the

Palliative Care Manual for People Living with HIV

patient’s thought patterns, content of speech, affect (mood), cultural orientation and social relationships. They may all provide the basis for identifying needs or planning an appropriate care in conjunction with spiritual intervention. Once a spiritual assessment has been made, appropriate spiritual intervention should be offered. Integration of pastoral care provider in the health care team will ensure that the team becomes familiar with religious any spiritual issues and the spiritual needs of patient are met. They also bring an interpretive, liturgical, and communal sense of spiritual care from her or his pastoral formation unique to that vocational formation.

PASTORAL CARE What is Pastoral Care?

PASTORAL CARE

Pastoral care (the role of the chaplain) By tradition, the role of the chaplain has been to administer to the patient certain prayers and rites particular to the patient’s religion. Today the chaplain acts as an extension of the patient’s personal and community support system, as well as a source of spiritual support for the patient. William Hulme defines pastoral care as a support ministry to the people and those close to them who are experiencing the familiar trials that characterize the world, such as illness, surgery, incapacitation, death and bereavement.

The main goal of a chaplain is called the ministry of presence, which is centered on a caring acceptance, a non-judgemental attitude and physical and emotional availability. They are trained to assess and address spiritual pain in patients, and to alleviate it if at all possible. This pain may arise from unresolved relationships with their perception of a higher power or with individuals in a person’s life. To this end, the health care provider should be familiar with the capabilities, attitudes, and philosophy of a chaplain or spiritual practitioner before making a referral.

Spiritual Care

Pastoral Care Models Denominational Model • The chaplain of a specific denomination or faith serves all patients of his or her faith or denomination. One for All Model • A chaplain is designated to one or more specific units in the clinical setting, becoming part of the treatment team and providing pastoral care for all patients and staff of the assigned unit.

Religious Counselling One of the services that chaplains can provide is religious counselling. This is defined as the explicit interaction between the chaplain and the faith system f the patient and the family members. It consists of four main tasks: • • • •

Assessment Emotional Faith Support Intellectual Faith Support Interpretation

1. Assessment • Needed to learn about the patient’s beliefs, to find out if the individual believes in God or a higher power. • If patient is not religious, it is necessary to discover about other spiritual beliefs and practices. • What gives the patient a sense of meaning and purpose • The assessment enables the chaplain to ascertain the parts of the patient’s beliefs system that are supportive as those that may hinder the patient’s coping ability. 2. Emotional Faith Support • Chaplain helps to deal with emotions relates to faith. • Chaplain tries to reinforce the positive aspects of the faith system by accepting affirming and clarifying them. • It is not intended to change the patient’s faith system but to hep the patient maximize the support it provides.

Palliative Care Manual for People Living with HIV

3. Intellectual Faith Support • It involves refocusing on its positive aspects rather than by simply supporting it. • It is a cognitive process in which the patient and the chaplain work together to change parts of the patient’s faith system that are not helpful. 4. Interpretation • The final part of the religious counselling • It involves presenting the faith issues and systems of the patient to the staff, to achieve better communication and proper medical care administration. • The chaplain may also serve as a mediator between patients and staff when misunderstandings concerning faith occur. For non-religious patients, there are non-traditional forms of spiritual expression that the pastoral care provider can offer. These will help the patient have a sense of meaning and connection with the surrounding world. These include: • • • • • •

Practice of meditation Guided imagery Journaling Reading / writing of poetry Yoga Creative arts such as Music and Gardening

REFERENCES: A Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa World Health Organization 2006 Puchalski C, Sandoval C. 2003. Spiritual Care. In: O’Neill JF et al, eds. A Clinical Guide to Supportive and Palliative Care for HIV/AIDS. Rockville, MD, U.S.A: U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau. Chaturvedi SK. Spiritual issues at end of life. Indian J Palliative Care 2007;13:48-52 Narayanasamy A. Palliative care and spirituality. Indian J Palliat Care 2007;13:32-41

Positive Community / Support Groups Pinoy Plus Association, Inc. (PPA) First support group of positive community in the Philippines established in 1994. It generally aims to empower PLHIV to improve dignity and quality of life, living and working without stigma and discrimination. 1805 P. Guevarra St., Sta. Cruz, Manila Email: pinoy_plus@yahoo.com Tel: +632 743 7293 PAFPI - Positive Speakers Bureau (PSB) Established for PLHIV and affected families trained speakers on HIV/ AIDS Lecture in Pre-departure Orientation Seminar (PDOS) for Filipinos working abroad. 2613 Dian St., Malate, Manila Email: pactionphil@netscpae.net Tel: +632 404 23911 T/F PAFPI - Treatment Action Group of the Philippines (TAGOP) This support group was established for the meaningful involvement of PLHIV in the advocacy towards universal access to treatment and care in Philippines. The group was founded in 2003. 2615 Dian St., Malate, Manila Email: positiveactionfoundation@yahoo.com Tel: +632 528 4531 Babae Plus Support Group for Women The support group for women living with HIV founded in 2004 and envisions a society respectful of the rights of women and providing them equal opportunities. 2615 Dian St., Malate, Manila Email: babaeplus@gmail.com Tel: +632 567 3506

HIV & AIDS Palliative Care Manual

Empowered of Western Visayas, Inc. (EWVI) This was established in 2006 and gained its legal identity in 2007 as a support group of PLHIV living within the Western Visayas Region. Dr. Rey Celis - HIV/AIDS Core Team (HACT) Leader Western Visayas Medical Center (WVMC) Mandurria, Iloilo City Phones: +6333 321 2841 to 50 / 0918 940 1217 Cross Breed of Negros This was established in 2006 as support group for PLHIV living in the Negros Island. Dr. Criselda Bacolor â&#x20AC;&#x201C; HIV/AIDS Core Team (HACT) Leader Corazon Locsin Montilebano Memorial Regional Hospital Lacson St., Bacolod City Phones: +6334 433 2697 / 435 1591 local 226 Advocates on Mindanao This was established as support group of PLHIV living within the Mindanao Island in 2006. Dr. Alicia Layug - HIV/AIDS Core Team (HACT) Leader Davao Medical Center J.P. Laurel Avenue, Davao City Phones: +6382 224 4915 / 222 1347 / 0920 424 1721 Cebu Plus This support group was established as for PLHIV living within the Cebu Island in 2009. Dr. Ma. Consuelo Malaga - HIV/AIDS Core Team (HACT) Leader Vicente Sotto Memorial Medical Center B. Rodriguez St., Cebu City Phones: +6332 253 7564 / 0919 347 3658

Institutions with Supportive & Palliative Care

Institutions with Supportive & Palliative Care METRO MANILA San Lazaro Hospital (SLH) Quiricada St., Sta. Cruz, Manila Dr. Rosario Jessica Tactacan-Abrenica Email: rtactacanabrenica@yahoo.com Tel: +632 743 8301 loc. 6000 Research Institute for Tropical Medicine (RITM) FILINVEST Corporate City, Alabang, Muntinlupa City Dr. Rosanna A. Ditangco – AIDS Research Head Tel: +632 807 2628 local 208 / 566 8807 Pinoy Plus Association, Inc. (PPA) 1805 P. Guevarra St., Sta. Cruz, Manila Eddy N. Razon - President Email: pinoy_plus@yahoo.com Tel: +632 743 7293 Positive Action foundation Philippines, Inc. (PAFPI) 2613 Dian St., Malate, Manila Rodel G. Navarra – Executive Director Email: pactionphil@netscpae.net Tel: +632 404 23911 T/F Remedios AIDS Foundation, Inc. (RAFI) 1066 Remedios cor. Singalong St., Malate, Manila Ma. Cecilia Llanto – Executive Director Website: www.remedios.com.ph Tel: +632 524 0924

HIV & AIDS Palliative Care Manual

Babae Plus Support Group for Women 2615 Dian St., Malate, Manila Lorna P. Garcia - President Email: babaeplus@gmail.com Tel: +632 567 3506 Precious Jewels Ministry San Lazaro Hospital Compound, Quiricada St., Sta. Cruz, Manila Lorraine Anderson – Executive Director Email: pjewels87@gmail.com Tel: +632 309 9967 AIDS Society of the Philippines (ASP) OTM Building, Scout Tuazon St., Quezon City Dr. Jose Melchor Narciso Sescon - President Email: aidsphil@pacific.net / aidsphil@asp.bayandsl.ph Tel. No.: +632 376 2546 / 410 0204 Caritas Manila, Inc. 2002 Jesus St., Padacan, Manila Tel. No.: +632 564 1831 to 36 The Salvation Army, Inc 1414 L. guinto Sr. St., Ermita, Manila Tel. No.: +632 524 0086

VISAYAS Kabataang Gabay ng Pamilyang Pilipino (KGGP) – Western Visayas St. Paul’s Hospital, Gen. Luna St., Iloilo City John Piermont V. Montilla – Executive Director Tel. No.: +6333 509 6394 PROCESS Foundation, Inc. – Western Visayas 31 Avancena St., Molo, Iloilo City Wilfredo Homicillada – Executive Director Tel. No.: +6333 337 7386 / 0920 527 5889

Institutions with Supportive & Palliative Care

HOPE Volunteers Foundation – Bacolod City 3/F Northpoint Bldg., B.S. Aquino Drive, Bacolod City Julio Labayen – Executive Director Tel. No.: +6334 433 6138 / 434 6362 / 0921 532 7720 Pink Center for Women – Cebu City VSSMMC, B. Rodriguez St., Cebu City Dr. Ma. Consuelo Malaga – Head Tel. No.: +6332 253 7564 / 0919 347 3658 United Church of Christ Philippines – Cebu City 85 Osmeña Boulevard, Cebu City Ms. Rose Celeste-Camba – Program Coordinator Tel. No.: +6332 253 7198 / 253 5726

MINDANAO Alliance Against AIDS in Mindanao, Inc. (ALAGAD-Mindanao) 557 Kamuning Street, Juna Subdivision, 8021 Matina, Davao City Alma Mondragon – Executive Director Email: alagadmindanao@gmail.com Tel. No.: +6382 297 3394 Human Development and Empowerment Services (HDES) PNRC Compound, Petit Barracks, Zamboanga City Ma. Lourdes Lim – Executive Director Tel. No.: +6362 992 0642

Treatment HUBS of the Philippines Treatment HUBS in the Philippines

LUZON HUB San Lazaro Hospital (SLH)

ADDRESS Quiricada St., Sta. Cruz, Manila

Research Institute FILINVEST for Tropical Corporate Mdicine (RITM) City, Alabang, Muntinlupa City Philippine General Taft Avenue, Hospital (PGH) Manila Ilocos Training & San Fernando, Regional Medical La Union Center (ITRMC) Baguio General BGHMC Hospital and Compound, Medical Center Baguio City (BGHMC) Cagayan Valley Tuguegarao Medical Center City, Cagayan (CVMC) Valley Jose B. Lingad San Fernando Memorial Medical City, Pampanga Center (JBLMMC)

CONTACT DETAILS (02) 743 8301 local 6000

CONTACT PERSON Dr. Rosario Jessica TactacanAbrenica

(02) 807 2628 local 208; 566 8807

Dr. Rosanna A. Ditangco

(02) 567 3394

Dominga Gomez Dr. Jimmy Mentigo

(072) 242 1143 local 112

(074) 442 2012; Dr. Ma. Lorena 442 3165 Santos

(078) 846 7240; Dr. Pasumbol 844 3789 (045) 961 3921; Dr. Teresita Reyes 961 3380

Palliative Care Manual for People Living with HIV

VISAYAS HUB Vicente Sotto, Sr. Memorial Medical Center (VSSMMC) Western Visayas Medical Center (WVMC) Corazon Locsin Montilibano Memorial Regional Hospital (CLMRH)

ADDRESS B. Rodriguez, Cebu City

CONTACT DETAILS (032) 2537564

Mandurrio,Ilolo (033) City 3212841to 50 Lacson St. Bacolod City

(034) 4351591 Local 226:4332697

CONTACT PERSON Dr. Ma. Consuelo Malaga Dr.Rey Celis

Dr. Criselda Bacolor

MINDANAO HUB

ADDRESS

CONTACT DETAILS

Davao Medical Center (DMC)

J.P Laurel Ave. Davao City

(082)2244915/ 2221347

Zamboanga Medical Center (ZMC)

Dr. Evangelista (062) 9910573 St. Sta. Catalina . Zambuanga City

CONTACT PERSON Dr. Alicia Layug Dr. Jejunee Rivera