Palliative Care in HIV and AIDS
Palliative care (PC): An approach that improves quality of life of patients and their families facing life-threatening illness, through prevention, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems. Active, total care of patients with incurable illness.
- Involves holistic approach using multi-disciplinary teams of care-givers.
- Goal: Optimising quality of life for patients and their families.
- Most aspects of PC are also applicable earlier in course of the illness in conjunction with medical treatment.
- Can improve care of HIV+ patients by integrating principles of PC into delivery of care and services throughout illness.
- Composition of the multi-disciplinary team varies depending on programme and setting in which patient being cared for. Most include nurse, clinical officer, social worker, community care giver and chaplain. When possible should also include physician, physiotherapist, nutritionist and pharmacist.
- Takes into account fluctuating course of HIV disease.
- Exacerbation of symptoms can occur, especially with OIs. Symptoms can improve with treatment.
- ART critical for stabilizing course of disease and improving quality of life.
- Other important factors: understanding of disease process, freedom from pain and distressing symptoms, adequate nutrition, emotional problems and mental illnesses, spiritual problems and support from family and other care-givers, especially when functional status diminished and disease is progressing.
- Provides relief from pain and other distressing symptoms
- Affirms life and regards dying as normal process
- Intends neither to hasten nor postpone death
- Integrates psychological and spiritual aspects of patient care
- Offers support system to help patients live as actively as possible until death
- Offers support system to help family cope during patient's illness and their own bereavement
- Uses team approach to address needs of patients and their families, including bereavement counselling if indicated
- Enhances quality of life, and may also positively influence course of illness
- Is applicable early in course of illness, in conjunction with other therapies that intended to prolong life, such as ART, chemotherapy, or radiation therapy.
- Includes those investigations needed to better understand and manage distressing clinical complications.
Pain and symptom control: Evidence-based methods used to control symptoms, including administration of oral morphine for moderate-to-severe pain using WHO analgesic ladder.
Supportive care: Attention to psychological, social, spiritual, and cultural needs of patient and family, including bereavement care using a holistic approach. (A Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa, Chapter 2)
- Priority is medical treatment following diagnosis, but there is element of PC in initial stages, involving management of OIs and side effects of treatment.
- PC prepares patient and family for symptom and pain management, and addresses psychosocial issues associated with chronic illness.
- As patient moves into chronic phase, focus moves more towards PC and involves less toward prolongation of life. Management of distressing pain control becomes priority.
- Needs of HIV+ patients can be placed into holistic model divided into 4 spheres: physical, social, psychological and spiritual, all of which have patient and family and/or community at centre.
- Needs change over time, so proportion of total care that is life-prolonging (e.g., treatment for OI, ART) and proportion that is palliative also vary. Holistic approach involves looking at patient as a whole i.e. taking into account all different aspects of his or her life.
A model can be defined as a way of delivering palliative care in different settings such as in the home, the hospice, the hospital with dedicated wards or beds, the health centre and mobile clinics. Services need to be appropriate to each area, district, or community and should take into account the cultural context in which they are delivered. However in order to have a palliative care service three criteria need to be met: these are education, drug availability and government policy/will. (WHO)
In Zambia, palliative care service delivery is mainly given, although not exclusively, through Home Based Care programs in the community or attached to hospital and or in Hospice facilities. There is now a move towards specialist Palliative Medicine units in hospitals or which are free standing.
Home Based Care is one of the most effective methods of providing palliative care to those who are chronically or terminally ill in the home setting close to the family support structures. It is an ideal model for the holistic approach to care. Home Based Care is essential comprehensive care provided to PLWHA. Adherence support is given by Health providers from the local health facility as well as by trained Home Based Caregivers to PLWHA who are on ART. (For more details on the various models of Home Based Care in Zambia, refer to the Ministry of Health/NAC Minimum Standards for Community and Home Based Care Organizations in Zambia Booklet, 2007).
The Government recognizes Home Based Care as an integral part of the primary health care delivery system and recommends that it should be included in curricula of all health care training institutions.
As Palliative Care is a holistic approach it demands a multidisciplinary approach to care and it is therefore important for Home Based Care Programs to link with health care facilities and other local organizations to ensure continuity of care and appropriate and timely referrals.
Notable success of the Home Based Care movement is its extensive coverage throughout Zambia with its involvement of communities and families who dedicate themselves to providing care voluntarily in a culturally appropriate setting. As a community based program, Home Based Care has contributed significantly to raising awareness of HIV/AIDS services such as VCT, PMTCT, STI, TB and ART.
- A model can be defined as way of delivering PC in different settings (e.g., home, hospice, hospital with dedicated wards or beds, health centre, mobile clinics).
- Services need to be appropriate to each area, district, or community and should take into account cultural context in which they are delivered.
- PC service requires 3 criteria: education, drug availability and government policy/will (WHO).
- In Zambia, PC service delivery is mainly given, although not exclusively, through home-based care programs in the community or attached to hospital and or in hospice facilities. There is now a move towards specialist palliative medicine units in hospitals or which are free standing.
Home Based Care (HBC):
- -One of most effective methods of providing PC to in home setting close to family support structures. An ideal model for holistic approach to care.
- -Adherence support given by health providers from local health facility as well as by trained home based caregivers to patients on ART.
- -Government recognizes HBC as integral part of primary health care delivery system and recommends inclusion in curricula of all health care training institutions.
- -As PC is a holistic approach it demands multidisciplinary approach to care and is therefore important for HBC programs to link with health care facilities and other local organizations to ensure continuity of care and appropriate and timely referrals.
- To provide care for clients as close to family as possible by primary and secondary caregivers.
- To ensure standard quality care
- To protect and uphold interests and rights of both care provider and recipient of PC services.
- To ensure continued monitoring and evaluation of PC services.
- To ensure that PC is integrated into HBC programs.
- Ongoing training for PC providers with particular emphasis on pain and other symptom control including adherence support for those already on ART.
- Chronically ill patients and their families
- HIV+ patients and their families
- Cancer patients and their families
- Children with chronic and terminal illnesses
- Orphans and vulnerable children
- Recipients of ART can experience a return to normal living and productive activity.
- ART is a vital form of palliative care as it improves quality of life for by decreasing VL, increasing CD4 count, preventing OIs and malignancies, and reduces symptoms.
- "Pain is what the patient says it is."
- Pain is one of most common symptoms encountered in palliative care.
- Pain rarely managed properly in chronic illness; many patients suffer unnecessarily during course of their illness. One of PC's main objectives is to alleviate pain through adequate pain management.
Steps for effective pain control:
- 1. Establish cause of pain
- 2. Assess type of pain
- 3. Use the principles of pain management as per WHO guidelines for use of analgesics taking a holistic approach which incorporates "total pain" concept.
- 4. Consider use of adjuvant drugs: drugs which may also have pain relieving effects, especially when taken together with analgesics (e.g. anti-depressants, corticosteroids and muscle relaxants).
- Control pain
- Prevent or minimize side effects
- Enhance quality of life
Pain Management Cycle: Pain -> listen/believe -> assess-->involve -> establish management -> enhance quality of life -> reassess -> pain
- Pain management cycle shows process by which effective pain control achieved. During holistic history-taking, one must listen and believe what patient says, then carry out pain assessment with involvement of the family and other health care providers.
- Important to establish cause, severity, and type of pain and determine how to manage it with view to improving quality of life.
- Thereafter, reassess and evaluate response to treatment and manage any side-effects.
- Always assess pain. Determine cause of pain by history and PE (for new pain or change in pain).
- -Where is pain? What makes it better or worse? Describe it. What type of pain is it? What are you taking now for pain?
- -Determine if there is infection or other problem with specific treatment. Prompt diagnosis and treatment of infection important for pain control.
- -Determine type of pain: common pain (e.g. bone or mouth pain) or special pains (e.g. shooting nerve pain, zoster, colic or muscle spasms)?
- -Is there psychological or spiritual component?
- -Pain should be graded with appropriate pain scale and findings recorded.
- Administer oral drugs in following order to treat pain: (1) Non-opioids (e.g. aspirin, paracetamol) +/- adjuvant, (2) weak opioids (e.g. codeine) +/- adjuvant +/- non-opioid (3) strong opioids (e.g. morphine) +/- non-opioid until patient free of pain.
- Use adjuvant drugs to calm fears and anxiety.
- Treat "by the clock" (i.e. every 3-6 hours) rather than "on demand" to keep patient pain-free. Start with low dose then titrate to patient's pain, until patient comfortable. Give next dose before previous dose wears off. For breakthrough pain, give extra "rescue" dose (same as 4-hourly dose) in addition to regular dose.
- Administering the right drug at the right dose at the right time is inexpensive and 80-90% effective.
- Surgical intervention on appropriate nerves may provide further pain relief if drugs not wholly effective.
- Treat pain according to whether it is common pain, special pain problem or both: (1) with analgesics, according to analgesic ladder, (2) with medications to control special pain problems, as appropriate
- Explain reason for treatment and side effects; always consider patient preference.
- Reassess need for analgesics and other interventions frequently. Repeat grading of the pain. Investigate new problems.
- If possible, give analgesics orally. Rectal is alternative. Avoid intramuscular dosing.
- Link first and last dose with waking and sleeping times. Write out drug regimen or present in a drawing. Teach its use. Check to be sure patient and family understands. Ensure that pain does not return and patient is as alert as possible.
- Pain is subjective experience that can be altered by emotional, social or spiritual state. Therefore, total pain management (physical, social, psychological and spiritual) is important. Reassurance and support helps alleviate pain. Effective pain control is achievable goal that results in improved quality of life for patient and family.
Total Pain: term used to describe encompassing nature of pain felt by people with life-limiting illnesses. Total pain is made up of the four elements below:
Physical Pain: physical discomfort that can be significantly increased by presence of other types of pain.
Social Pain: occurs when patient's illness causes difficulties in relationships with family and significant others.
Emotional and Psychological Pain: occurs when patient's illness causes emotional distress. Includes fear, guilt, anger, frustration, anxiety and depression.
Spiritual Pain: suffering experienced when one loses or questions their spirituality, the valuing of non-material aspects of life. It is the feeling of being connected to other people, the earth, the universe and God. Not always expressed as religious belief.
- Combine with analgesics if patient agrees:
- Emotional support and counselling.
- Physical methods: touch, stroking, massage, rocking, vibration; ice or heat compresses; deep breathing techniques.
- Cognitive Methods: distraction (e.g. listening to the radio); music therapy; visualization (e.g. imagining a pleasant scene).
- TENS (transcutaneous electrical nerve stimulation).
- Some well established traditional practices which are helpful and not harmful to the patients can be included in care of the patient.
- HIV+ patients also suffer from other symptoms during their illness, including symptoms caused by disease process, treatments or drugs being used, and co-existing diseases.
- Approach to control of these symptoms involves: (1) listening to details from patient and relatives and involving them in decision making process, (2) asking about all symptoms, (3) taking detailed drug history, (4) looking for reversible factors.
- Interlacing questions about physical symptoms with questions about feelings generally increase the effectiveness of information.
- Treat symptoms promptly.
- Consider disease-specific palliative therapy.
- Other considerations:
- -Include patient in decision-making.
- -Involve relatives.
- -Skillful prescribing.
- -Institute non-pharmacological interventions.
- -Use a drug card.
- -Make a plan (e.g. what to do about vomiting).
- -Monitor regularly (until symptom free)
- -Reduce or stop drugs whenever possible.
- -At all stages of management consider involvement of interdisciplinary team, referral to appropriate service/more experienced clinician.
- Anxiety, depression, confusion, drowsiness.
- Oral problems: Dry/sore mouth.
- GI problems: Anorexia, constipation, nausea, vomiting, diarrhea, ascites, fistula.
- Respiratory problems. Dyspnoea, cough, pleural effusion.
- Skin problems: itching, sweating, edema, pressure sores.
- Weakness and fatigue