Palliative care is the care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention of suffering to improve the quality of life.
- focus on the quality of life is the key feature of the definition
- it is person-oriented, not disease-oriented
- it is not primarily concerned with life prolongation (nor with life shortening)
- it is not primarily concerned with producing long term disease remission
- it is holistic in approach and aims to address all the patient’s problems, physical, spiritual and psychosocial
- it uses a multidisciplinary or inter-professional approach involving doctors, nurses and allied health personnel to cover all aspects of care
- it is dedicated to the quality of whatever life remains for the patient
- palliative care is appropriate for all patients with active, progressive, far-advanced diseases and not just patients with cancer
- palliative care is appropriate for patients receiving continuing therapy for their underlying disease
WORLD HEALTH ORGANIZATION DEFINITION
Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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.
Palliative care Principles:
- 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
- Offers a support system to help patients live as actively as possible until death
- Offers a support system to help the family cope during the patient’s illness and in their own bereavement
- Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated
- Will enhance 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.
The relief of suffering is an ethical imperative
Every patient with an active, progressive, far-advanced illness has a right to palliative care
Comprehensive palliation entails:
Relief suffering from:
- Physical pain
- Other physical symptoms related to the illness or as a result of disease modifying therapy such as chemotherapy & radiation therapy. The symptoms that are common are;
- Loss of appetite
- Difficulty in breathing
- Loss of hair
- Darkening of nails and palms secondary to chemotherapy
- General body weakness etc.
- Psychological problems (Psychological Pain)
- Social problems (Social Pain)
- Cultural problems
- Spiritual problems (Spiritual Pain)
The components of palliative care, or the aspects of care and treatment that need to be addressed, follow logically from the causes of suffering. Each has to be addressed in the provision of comprehensive palliative care, making a multidisciplinary approach to care a necessity.
CAUSES OF PAIN
In palliative care, there are many different possible causes of pain
Examples of the causes of pain in palliative care patients include pain
- Due to the primary disease e.g. tumour infiltration, nerve compression
- Associated with treatment e.g. diagnostic and staging procedures, surgery
- Due to general debilitating disease e.g. pressure sores, constipation
- Unrelated to the primary disease or treatment e.g. Arthritis, Ischaemic heart disease.
In this case determination of the cause of pain is an important part of assessment, as therapy directed at the cause may greatly improve pain control
- Treatment of the underlying causative factors is given as necessary.
- Control of pain and physical symptoms.
- Through medication.
- social Pain
- Social issues are addressed to, social supports encouraged
- Social support system for family and caregivers is provided.
- Cultural differences are respected in the care process
- spiritual Pain
- spiritual and existential problems are an important source of clinical suffering
- they may cause or aggravate pain and psychosocial problems
- they can cause an anguish all their own
- recognition and successful management of spiritual and existential problems is an important part of palliative care
Spiritual and existential problems encountered by the terminally ill can be broadly grouped
Relating to the past
- value and meaning of a person’s life
- worth of relationships
- value of previous achievements
- painful memories or shame
- guilt about failures, unfulfilled aspirations
Relating to the present
- disruption of personal integrity
- physical, psychological and social changes
- increased dependency
- meaning of a person’s life
- meaning of suffering
Relating to the future
- impending separation
- concerns about death
Relating to religion
- strength of their faith
- whether they have live according to, and not disgraced, their faith
- existence of after-life
- most faiths are reassuring that biological death is not the end of life
- believers are comforted
- that there is something after death
- that their wrong doings can be forgiven and their good deeds be credited
- families sharing the same faith
- may help them cope better looking after a terminally ill relative
- may be a source of comfort to the dying patient, confident that faith will help those left behind
- people with a deep religious faith often find it grows as death approaches
- for those with a less well-developed/less tested faith, impending death can be a major challenge to their faith
- general supportive counselling
- support groups
- relaxation therapy
- stress management techniques
- coping skills training
- cognitive therapy
- supportive psychotherapy
Effective treatment of psychological distress in patients with advanced cancer may greatly improve the quality of life
A truism of palliative care is that ‘nothing is trivial’. Everything the patient says, everything they experience is worthy of our attention, trivial as it may at first appear. Time spent listening is never wasted.
HOME BASED CARE
There are various models for community based palliative care services employed
- Service providing specialist advice and support for the family doctors and community nurses managing the patients.
- Service providing ‘hands-on’ nursing and allied health services to patients at home, in co-operation with the patient’s own doctor.
- Comprehensive services providing medical, nursing and allied health care to patients and their families at home.
NURSING CARE MANAGEMENT
- Pain assessment and management
- Skin care and prevention of pressure sores
- Wound care
- Mouth care
- Feeding a patient
- Bathing a patient
- Dealing with incontinence, urinary retention and constipation.
- Diarrhoea and vomiting
- Lifting, moving and turning a patient
- Usually form part of in-patient palliative care unit
- Provide care, rehabilitation, support and respite during the day for people under care at home, who are still well enough to be transported to and from the Day Care Unit.
- Patients and family members from different backgrounds, experience and with different conditions share and encourage each other.
- Group therapy is essential here as they indulge themselves in occupational and recreational activities i.e. Knitting
- Psychological and Spiritual counseling and motivation is key for both patients and their families.
- Patients and families get Health educated about care needed in life limiting illnesses.
GRIEF & BEREAVEMENT
- GRIEF: the psychological, social, spiritual, physical and emotional reactions to loss.
- BEREAVEMENT: this is the situation of anyone who has lost a person to whom they are attached.
- MOURNING: is the process of adaptation, including the cultural and social rituals prescribed as accompaniments
- ATTACHMENT: a strong tendency to remain close to or, from time to time, to return to another individual.
- ANTICIPATORY GRIEF: psychological social, spiritual, physical and emotional reaction to anticipation of loss
Strategies for bereavement follow-up
- Attending the funeral or memorial service or holding a memorial service for families at place of work.
- Making phone calls at the ‘critical times.’
- Providing a card with contact information and resources.
- Making home visits.
- Making referrals for individual or group counselling.