Palliative care

 

Palliative care

Palliative care is an approach that improves the quality of the life of patients and their families facing the problem associated with life-threatening diseases and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual. Palliative care:

provides relief from pain and other distressing symptoms;

affirms life and regards dying as a normal process;

intends neither to hasten or postpone death;

integrates the psychological and spiritual aspects of patient care;

offer a support system to help patients live as actively as possible until death;

offer a support system to help the family cope during the patients illness and in their own bereavement counseling, if indicated;

will achieve quality of life, and may also positively influence the course of illness;

is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Why it is important

Palliative care is an essential component of a comprehensive package of care for people living with HIV/AIDS because of the variety of symptoms they can experience – such as pain, diarrhea, cough, shortness of breath, nausea, weakness, fatigue and confusion. Lack of palliative care results in untreated symptoms that hamper an individual’s ability to continue his or her activities of daily life. At the community level, lack of palliative care places an unnecessary burden on hospital or clinic resources.

Principles

Palliative care is core component of a comprehensive of HIV/AIDS care;

Symptomatic treatment and terminal care are part of palliative care;

palliative care can be provided through home care projects, hospitals and palliative wards;

A patient may access palliative care, when:

• the patient refusing curative treatment and /or requests palliative care;
• appropriate treatment is not available or affordable;
• no medical progress or cure anticipated – based on the findings of physical examination and appropriate diagnostics;
• the patient’s condition deteriorates under proper treatment.

Regional AIDS centers will be coordinating the referral to palliative care and other services, at the request of specialists and organizations in delivering palliative care services;

Partners, such as non-governmental organizations (NGOs), will be encouraged to deliver palliative care, thereby adhering to the national standards;

Access to palliative care will not be artificially restricted due to political or social constrains;

Palliative care will be provided according to needs of the patient and WHO standards of care;

Treatment of other illnesses and conditions will be withheld at any stage of the diseases( e.g. treatment for tuberculosis, (TB), ART, substitution treatment for IDUs);

Drug substitution treatment should be offered to all IDUs, if appropriate.

Special advice for terminal care

Preparing for death

Encourage communication in family;

Discuss worrying issues such as custody of children, family support, future school fees, old quarrels;

Tell the patient they will be loved and remembered;

Talk about death if the person wishes to;

Make sure patient gets help feelings of guilt or regret;

Connect with spiritual counselor or pastoral care as patient wishes.

Presence

Be present with compassion;

Visit regularly, hold hands, listen, converse.

Caring

Provide comfort measures;

Moisten lips, mouth, eyes;

Keep patient clean and dry; skin care;

Treat fever and pain (around the clock if necessary);

Control other symptoms with medical treatment as needed;

Provide liquids, small amount of food as needed;

Provide physical contact.

Referral

The regional AIDS centre will be coordinating institution to refer the patient to palliative care providers – according to what is required;

Other disciplines and partners will contact the regional AIDS center to initiate the referral process;

NGOs will be active partners of the regional AIDS centers in the referral services and the actual provision of the palliative care;

In case patient is on ART and any other treatment, such as substitution therapy, continued monitoring needs to be ensured.