The word “palliate” means “to make the effects of something, such as an illness, less painful, harmful, or harsh”.
Palliative care began with the story of hospice, which is derived from hospitium, a Latin word meaning hospitality. Hospices were resting places for travellers and pilgrims in the Middle Ages in Europe.
Religious orders established and operated these places, which provided hospitality and care to travellers and those who were ill or dying.
The hospice disappeared for a while, but re-emerged in the 19th century in the United Kingdom and France, where they were operated by religious orders providing care for the terminally ill, and accommodation for the incurable and destitute.
Modern day hospices began in 1967 when Dame Cicely Saunders established St Christopher’s Hospice in London, UK. There was then a growing recognition that medical advances, while offering cures for many conditions, ignored those who could not be cured.
Saunders, a nurse who became a social worker, and then a doctor, took up the challenge of addressing the neglect of the terminally ill. Her work in St Christopher’s Hospice, which addressed pain and symptom management, and recognised the multi-dimensional aspects of illness and the need for emotional, psychological and spiritual support for the terminally ill and their family, laid the foundations for modern hospice and palliative care practice.
Balfour Mount, a Saunders student, first used the term “palliative care” in 1975. He recognised the need to avoid the word “hospice” because of its association with destitution in France.
He developed a comprehensive hospital-based service at the Royal Victoria Hospital in Montreal, Canada, under the name Palliative Care Service, which meant non-curative therapy aimed at improving quality of life.
The World Health Organization’s (WHO) definition is “Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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 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 counselling, if indicated; enhances 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.”
Palliative care integrates an individual’s specific needs into care and addresses varied issues.
No two persons are the same, with differences in gender, age, social, cultural and religious backgrounds, leading to very different needs.
Physical symptoms like pain, fatigue, vomiting, poor appetite, difficulty breathing and/or sleeping are treated with medications or other treatments like nutrition, physiotherapy and so on. Pain from cancers may be treated with surgery, chemotherapy or radiotherapy.
Emotions are aplenty in serious or life-threatening conditions. Fear, depression, anxiety, and even, suicidal thoughts, are common.
Counselling, support groups, family sessions and referrals to mental health specialists may be necessary for patients and their family members to help the understanding of their emotions and how to cope with them.
Patients and families in such situations often search for a deeper meaning of life. Some question their faith whilst others find more faith.
One of the objectives of palliative care is to assist patients to explore their beliefs and values to enable them to be at peace with themselves, or at least, reach an appropriate point of acceptance.
There are also practical considerations that may need addressing. They may include employment concerns, insurance questions, finance and legal matters, and for some, advance directives.
There may be a need for assistance in addressing the technical aspects of some of these issues, which many people find difficult to understand. Referrals to the relevant expertise may be necessary.
The transition from curative treatment to end-of-life care is a vital aspect of palliative care. Patients and their families have to be prepared for the physical changes towards the end of life and its management. It also includes emotional issues and difficult questions like when to withdraw treatment, transition to hospice and grief counselling.
Hospice is a concept, not a particular place or facility. Although medical science cannot control the illness anymore and prolong life, comfort can always be provided effectively.
Hospice care is provided to the patient at a place, which is usually the patient’s home because it is where most people would like to be during their last days.
However, a patient may require care that cannot be provided at home or by their caregiver, in which case, care is delivered in a place other than the patient’s home.
The hospice may be free-standing with in-patient facilities, or there may be designated rooms in a hospital or nursing home.
Such places are usually made as home-like as possible with family members having access to the patient at all times.
Hospice care involves the family of the patient and is more than medications and nursing care.
It involves evaluation of the patient’s condition, particularly, pain and suffering. It also involves evaluation of the emotional and spiritual status of the patient and family; his or her wishes about dying and death; financial or legal issues, if any; and any other issues that come to light.
It also involves assistance for family members to keep up with their other responsibilities and interests.
It may also involve provision of volunteers to care for the patient whilst family members sort out things that need to be done.
It is important to remember that hospice is not an alternative route to admission to an intensive care unit (ICU).
The whole concept of hospice care is premised on the assumption that most people do not want to die in an ICU with tubes and wires attached to their bodies.
Dr Milton Lum is a member of the board of Medical Defence Malaysia. The views expressed do not represent that of any organisation the writer is associated with. The information provided is for educational and communication purposes only and it should not be construed as personal medical advice. Information published in this article is not intended to replace, supplant or augment a consultation with a health professional regarding the reader’s own medical care. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.