DR. ENNAPADAM S. KRISHNAMOORTHY AND THADEUS ALPHONS
For millions of patients with terminal illnesses, pain is an everyday reality. But with only two per cent of India’s population under the palliative care cover, we need to put a professional health service system and a well-defined policy in place.
It is imperative to use a multidisciplinary approach involving doctors, nurses, clinical social workers, psychologists, physiotherapists, dieticians and allied health personnel…
To die proudly when it is no longer possible to live proudly. Death of one’s own free choice, death at the proper time, with a clear head and joyfulness, consummated in the midst of children and witnesses: so that an actual leaving is possible while he who is leaving is still there.
The word “palliative” is derived from the Latin word “palliare” meaning to cloak or to cover. According to the International Association for Hospice and Palliative Care, palliative care is the care of patients with active, pro gressive, advanced disease, for whom the focus of care is the relief and prevention of suffering and maintenance of quality of life rather than striving to halt, delay or reverse progression of the disease itself or provide a cure. Originally, the term “palliative care” was synonymous with care for cancer in its various manifestations. Today, it is increasingly used with regard to diseases other than cancer such as chronic, progressive pulmonary disorders, renal disease, chronic heart failure, progressive neurological conditions and progressive infections such as advanced stages of Acquired Immune Deficiency Syndrome. In addition, there is growing awareness of the need for services geared specifically for children with serious illness, paediatric palliative care.
According to the World Health Organisation, the aim of palliative care is to improve the quality of life of patients with life-threatening illness, and that of their families. This encompasses all interventions that prevent and relieve suffering, physical, psychosocial and spiritual. Thus, with regard to pain, a common symptom of many progressive and debilitating disorders, a number of interventions in combination are useful. Drugs, both oral and intravenous for pain management; physical therapy to reduce pain, especially that relating to the joints, nerves or secondary muscle spasm; psychological approaches to help address grief, anger and guilt; emotions associated with terminal illness; and a spiritual approach that provides solace, helping the person cope better with the pain, thereby reducing the nature and quantum of human suffering. There is, therefore, a definite need for care providers to go beyond the conventional in providing care and solace to the dying person, addressing the varied dimensions of the human condition in the setting of chronic illness. Indeed, caring for the family in this setting is as important as caring for the ill person.
Palliative care began in the hospice movement although it is now widely used outside the realm of traditional hospice care. Hospices were originally places of rest for travellers in the fourth century. In the 19th century, a religious order established hospices for the dying in Ireland and London. The modern hospice movement, credited to Dame Cicely Saunders, gained momentum in the United Kingdom after her founding of St. Christopher’s Hospice in 1967, and has grown dramatically in recent years. In India, Dr. D’Souza, a cancer surgeon from Tata Memorial Hospital, Mumbai, is thought to have started the first hospice, “Shanti-Avedna Ashram”, in the year 1986. Over the years, although there has been a mushrooming of such centres around the world, there remains a challenge of proportional provision of required services, especially in developing countries. There is also the challenge of meeting quality standards in palliative care. Key institutions like the Palliative Care Network; Asia Pacific Hospice Palliative Care Network (APHN); International Association for Hospice and Palliative Care (IAHPC) and the Indian Association of Palliative Care (IAPC) are involved in developing these resources, setting standards and influencing policy.
The World Health Organisation (1990) and the Barcelona (1996) declarations have called for palliative care to be included in every country’s health services. It is estimated that 52 million people die each year and a good proportion of them die with unrelieved suffering. About five million people die of cancer each year, to which can be added the numbers of patients dying with AIDS and other chronic infections who will benefit from palliative care. Add to this the number who suffer in terminal stages of non-communicable disease; afflictions of the brain, heart, lungs, kidneys, bowels, bones, joints and nerves; many consequent to lifestyle diseases. In developed and developing countries alike, people are thus living and dying slowly in unrelieved pain, with uncontrolled physical symptoms, with unresolved psychosocial and spiritual problems and in fear and loneliness. While this phenomenon has been widely reported and published, both in the scientific and the lay press, affirmative action in public health terms, to develop and provide services for people with terminal illness seems grossly inadequate.
Burden on the family
In India for example, the care of such individuals falls on the family, and the assumption appears to be that the family alone should take responsibility. Given our ethos and culture, while we would perhaps continue to make the family the focus of palliative care provision, it is critical that we understand and appreciate their need to be supported by health service providers and to ensure that such support is available, accessible, affordable and acceptable. At present, the efforts to support families of individuals needing palliative care are few and far between, many being cancer-led and NGO-based. All this places an enormous burden of care giving on families, and affects both their quality of life and their productivity. One comes across many young professionals who are forced to put their lives and careers on hold and care for their loved ones. With rapid urbanisation and changing family structures, there is an urgent need for the policy maker to focus his attention on developing adequate and appropriate resources that will support families of people with chronic and progressive illness. The relief of suffering is after all an ethical imperative for the healthcare provider and every patient with an active, progressive, far-advanced illness has a right to palliative care.
There is no one right or wrong model for the provision of palliative care. The best model is determined by local needs and resources. IAHPC believes that each developing country should be encouraged and enabled to develop its own model of palliative care, appropriate to the needs of the local patients and the available resources, taking advantage of the experience and expertise accumulated in developed countries, and not be expected to copy models more appropriate to affluent countries. The in-patient palliative care unit may be part of a hospital or an independent free-standing unit, community based, day hospice and/or day palliative care unit. A combination of these services may be ideal as it will give the patient and his family the opportunity to choose from a buffet, depending on their individual needs, rather than make do with what is available. In the Indian context, the development of community-based resources, including the training of primary care physicians, community health workers and relevant others in palliative care provision are urgently required. With the family being the focal point of care in India, training family members and developing supportive community resources may well be the ideal for us to aspire for.
It is also imperative to use a multidisciplinary approach involving doctors, nurses, clinical social workers, psychologists, physiotherapists, dieticians, and allied health personnel to cover all aspects of care. Such a holistic approach to care, encompassing all aspects of a patient’s suffering, is generally not regarded as modern medicine’s strength. Integration of the allopathic system with traditional indigenous medical streams that have innate palliative care based strengths; Ayurveda for example, may offer the person with terminal illness in India, a better quality of life. What is necessary, however, apart from developing awareness of this emerging need, is to develop health policy that will effectively address the gamut of palliative care needs in the years that come.
Dr. E.S. Krishnamoorthy is Director,
TS Srinivasan Chair and Senior Consultant
and Thadeus Alphons is a Clinical Social Worker
and Senior Research Associate at The Institute of
Neurological Sciences, VHS Hospital, Chennai. E-mail: firstname.lastname@example.org
Guidelines to care-givers
Care-giving is a difficult and stressful process, one that can drain our energy and resources and test our resilience. Your ill relative may be battling with several emotions surrounding the illness and transmit these to you. You would do well to:
Try to accept the situation your loved one is in; focus on keeping her/him comfortable and stop constantly battling the cause once palliation has been chosen as the way forward.
Find an obliging local doctor who will support you in your intermittent needs; Once palliation begins, the relevance of the specialist diminishes considerably. Find a nursing service that can help you at least for half the time each day or through daily visits during which the more difficult tasks bathing; toileting; management of feeding and draining tubes etc. are taken care of.
Conserve your energy and draw upon all available resources to share the burden of care; no one can shoulder the burden of care giving alone, nor should they try to.
Find your own reference points - people you can share your emotions with; a shoulder to lean on. Your loved one can no longer do this for you, and yet you will have to be there always to support her/him.
Do not feel guilty about needing some respite or taking a break. It's important to take regular breaks in order to sustain effective care-giving. Continue to engage in your hobbies, meet up with friends, watch movies, read; in short doing things that give you pleasure.
Do not feel guilty about becoming angry (inside your head) with your loved one; or frustrated; or even feeling hostile at times. These are normal emotions that are brought on by the stress of care-giving. They are transient and will pass.
Do not panic each time there is a blip in your loved one's condition; remember palliation is about keeping a person comfortable and helping to maintain their quality of life.
One family member usually takes the lead in care provision; others play a supporting role. It's important that care-givers playing a supporting role learn to trust the judgement of the primary care-giver who is best placed to make decisions about situations as they evolve.
Remember, the effective care-giver is brave but not foolhardy. Do not hesitate to ask for help from loved ones and professional agencies.
6 months ago