It is an approach, a way of delivering services that cares for the patient as a whole person, addressing the physical, emotional and spiritual needs and practical concerns, of both the patient and the family. Palliative Care aims to improve the quality of life of a patient facing a life-threatening illness and that of his family.
It should be an essential service provided by the government. The World Health Assembly recommends that palliative care should be part of the healthcare package that governments provide for the whole population, and integrated into the healthcare system including as part of universal health coverage.
WHO IS IT FOR?
People facing any life-threatening illness, whether curable or incurable. People of all ages, including children born prematurely or with genetic or developmental disorders who may not be able to lead a normal life or have a normal lifespan.
WHAT KIND OF ILLNESS?
Any kind of illness which is life-threatening or life-limiting, such as cancer, severe heart failure, kidney failure, chronic obstructive lung disease, neurological diseases including stroke, dementia & degenerative disorders, liver failure, people in intensive care units with life-threatening trauma or multisystem failure. WHEN IN THE COURSE OF DISEASE SHOULD PALLIATIVE CARE START? It is recommended that referral should be early in the course of a life-threatening illness, at diagnosis and while the disease is being treated. Palliative care complements disease management by keeping the patient as well as possible to undergo the treatment, dealing with the informational needs, seeing whether extra support is needed to help the patient cope, whether the family needs support in care provision or emotional coping, and whether resources in the community needs to be mobilized.
HOW IS PALLIATIVE CARE PROVIDED?
Because of the wide spectrum of needs, no one discipline can provide all the care. Palliative care is usually provided by an interdisciplinary team comprising doctors, nurses and medical social workers as the core team, and includes the services of physiotherapists, occupational and speech therapists, rehabilitation physicians, pharmacists and other specialists as needed. Volunteers may be involved to give community and practical support.
WHERE IS PALLIATIVE CARE PROVIDED?
Palliative care may be provided in any setting that the patient finds himself in – at home, in hospital, in a hospice or nursing home or long-term facility. Palliative care teams may function in all these settings
GOOD PAIN & SYMPTOM CONTROL
This is key to keeping the patient as well as possible to withstand demanding treatment regimes, and giving the patient enough energy and stamina to deal with other priorities in life, such as planning for the future. There is a need to ensure that healthcare professionals in different disciplines and at every level are well trained to recognize and manage, as well as prevent, pain and other symptoms.
This includes meeting basic needs such as food, housing, security, education of the children, etc. This can also mean help in care giving, providing transport, collecting medications, medical aids and equipment.
A life-threatening illness may have severe financial implications. Not only may the patient be unable to work or support the family, but the cost of medical treatment may be financially crippling. The patient and family may need help to access financial support for daily necessities or for medical treatment, including travel to and from a medical facility. Financial counseling may also be needed, as to what expensive treatments may or may not be able to deliver. Social workers will often play an important role in helping the patient and family access additional financial resources from the community or to get costs reduced by qualifying for programs.
Listening to a patient as he works out how to make sense of what is happening can be enormously helpful. Each person has to work out for himself how he is going to face a situation and deal with the issues. The person can be helped by an active listener who does not impose his own views. Emotional support may be provided by all the members of the palliative care team, including volunteers.
Knowing what is going on and one’s options helps reduce fear. Good communication is a skill that all health professionals can acquire through training. Information on treatment and what treatment can or cannot achieve is important to the patient and the family, in order for them to make rational decisions. The cost and burden of treatment, not just financial cost, but also side effects of treatment, time spent in hospital or on therapy, travel and curtailment of other activities, need to be conveyed to the patient and family.
JOURNEYING WITH THE PATIENT
Accepting each patient for who he is and how he copes with life’s challenges is part of the approach of palliative care.
VALUING EVERY MOMENT OF LIFE
Palliative care does not support the intention to shorten or extend life. Instead, every moment of life is valued, right to its very end. Patients and families need to be clear that the treatment of symptoms does not have the intention to shorten life, but rather to relieve suffering and allow the patient to be as aware as possible in order to have meaningful interaction with family. This may not always be possible if the patient is too weak or agitated. But families should be taught and empowered to comfort the patient in all situations.
Every person’s illness is different, in terms of its pathology, its extent, how it presents and how each person experiences it. So care and support has to be individualized, even as protocols for treatment of a disease are standardized.
DEALING WITH LOSSES
People need time & space to come to terms with a change in life circumstances. Losing one’s health, having to change one’s lifestyle or realizing that one’s life span is limited takes a lot of adjusting to.
DEALING WITH FEAR
Fear of suffering, fear of the unknown, and other fears add greatly to the physical suffering. Facing fear with courage and hope may need reinforcement and support from family and professional care givers.
ALLOWING TIME AND SPACE TO GRIEVE
Patients may grieve over loss of health, loss of opportunities and time with family, and families may grieve for the future loss of the patient. Everyone grieves in his own way, but some may need extra support if the burden Is too heavy. Family and friends would provide the first line of support, but sometimes help from the community or professional help is needed. The Palliative Care team will screen through to see if a patient and family needs professional help or practical support.
COPING WITH SUFFERING
Finding meaning in suffering is part of coping with suffering Why should this happen to me? What have I done to deserve this? Why do bad things happen to good people? Sometimes these questions may be answered within the framework of a patient’s religion or spirituality.