What is Palliative Care?
Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. This care is appropriate at any age and at any stage in a serious illness.
The Difference between Palliative Care and Hospice
Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.
Principles of Palliative Care
- Palliative care incorporates the whole spectrum of care — medical, nursing, psychological, social, cultural and spiritual. A holistic approach, incorporating these wider aspects of care, is good medical practice and in palliative care it is essential.
- The principles of palliative care might simply be regarded as those of good clinical practice, whatever the patient’s illness, wherever the patient is under care, whatever his/her social status, creed, culture or education.
Attitudes and principles required for successful Palliative Care
A caring attitude
- involves sensitivity, empathy and compassion, and demonstrates concern for the individual
- there is concern for all aspects of a patient’s suffering, not just the medical, nursing or social work problems
- there is a non-judgmental approach in which personality, intellect, ethnic origin, religious belief or any other individual factors do not prejudice the delivery of optimal care
Consideration of individuality
- the practice of categorizing patients by their underlying disease, based on the similarity of the medical problems encountered, fails to recognize the psychosocial features and problems that make every patient a unique individual
- these unique characteristics can greatly influence suffering and need to be taken into account when planning the palliative care for individual patients
- ethnic, racial, religious and other cultural factors may have a profound effect on a patient’s suffering
- cultural differences are to be respected and treatment planned in a culturally sensitive manner
- the consent of a patient, or those to whom the responsibility is delegated, is necessary before any treatment is given or withdrawn
- the majority of patients want shared decision making although physicians tend to underestimate this
- having assessed what treatment is appropriate or inappropriate, this is discussed with the patient
- in most instances, adequately informed patients will accept the recommendations made if they have been explained in non-medical language
Choice of site of care
- the patient and family need to be included in any discussion about the site of care
- patients with a terminal illness should be managed at home whenever possible, although few do so, most dying in hospitals
- clear and regular communication between all the health care professionals involved in a patient’s care is essential and is fundamental to many aspects of palliative care
- good communication with patients and families is also essential
- all palliative treatment should be appropriate to the stage of the patient’s disease and the prognosis
- over-enthusiastic investigations, therapy that is inappropriate, and patient neglect must be avoided
- Palliative care has been accused of the medicalisation of death, and care must be taken to balance technical interventions with a humanistic orientation to dying patients. This is where a team approach is essential, each member of the team being able to see different aspects of the patient’s suffering, personality and needs.
- the prescription of appropriate treatment is particularly important in palliative care because of the unnecessary additional suffering that may be caused by inappropriately active therapy or by lack of treatment
- when palliative care includes active therapy for the underlying disease, limits should be observed, appropriate to the patient’s condition and prognosis and expressed wishes which may be different from those of the clinicians
- treatment known to be futile, given because ‘you have to do something’, is unethical
- where only symptomatic and supportive palliative measures are employed, all efforts are directed at the relief of suffering and the quality of life, and not necessarily at the prolongation of life
Comprehensive inter-professional care
- the provision of total or comprehensive care for all aspects of a patient’s suffering requires an interdisciplinary team
- palliative care should deliver the best possible medical, nursing and allied health care that is available and appropriate
Consistent medical care
- consistent medical management requires that an overall plan of care be established, and regularly reviewed, for each patient
- this will reduce the likelihood of sudden or unexpected alterations, which can be distressing for the patient and family. It may lessen the chance of crises or medical emergencies which can frighten the patient and relatives.
- involves the effective organization of the work of the members of the inter professional team, to provide maximal support and care to the patient and family
- care planning meetings, to which all members of the team can contribute, and at which the views of the patient and the family are presented, are essential to develop a plan of care for each individual patient
Continuity of care
- the provision of continuous symptomatic and supportive care from the time the patient is first referred until death is basic to the aims of palliative care
- problems most frequently arise when patients are moved from one place of care to another and ensuring continuity of all aspects of care is most important
- good palliative care involves careful planning to prevent the physical and emotional crises that occur with progressive disease
- many of the clinical problems can be anticipated and some can be prevented by appropriate management
- patients and their families should be forewarned of likely problems, and contingency plans made to minimize physical and emotional distress
- the relatives of patients with advanced disease are subject to considerable emotional and physical distress, especially if the patient is being managed at home
- particular attention must be paid to their needs as the success or failure of palliative care may depend on the caregivers’ ability to cope
- Palliative care, whether at home or in a hospital, often succeeds or fails depending on the care and support provided for the caring relatives
- is a necessity for all patients with advanced disease for whom increasing and new clinical problems are to be expected
- this applies as much to psychosocial issues as it does to pain and other physical symptoms
Advance Care Planning
- in the palliative care setting, a person should be encouraged to choose a substitute decision-maker and to write down their health and care preferences in an Advance Care Directive
- an Advance Care Directive for someone in palliative care should consider preferences for pain and other symptom management; cultural, emotional and spiritual support, and personal care
Communication with Patients - important and potentially difficult discussions are frequently necessary with palliative care patients who have active, progressive, far-advanced disease, regarding:
- breaking bad news
- further treatment directed at the underlying disease
- communicating prognoses
- admission to a palliative care program
- artificial nutrition
- artificial hydration
- medications such as antibiotics
- do-not-resuscitate orders
Decisions must be individualized for each patient and should be made in discussion with the patient and family.