Palliative care Care beyond cure

DR. DIPESH DHITAL

Pain, like a red-hot iron pushes into my bones and twists around”. A 50 year-old male in pain with advanced cancer cheek and infected ulcer has his agonizing tale to tell. A woman of 35 years, from low socio-economic class hailing from the remote hilly eastern Nepal, has advanced breast cancer. One morning, she is upset and says, “Doctor, I am scared. Am I going to die? Who will look after my small children?” These are some of the representing glimpses of the harrowing scene normally we face in medical care. The presenting complaints usually form only the tip of the iceberg. So, the need is to focus on the palliative care, perhaps, the neglected and still underdeveloped medical branch in Nepal despite some advances, in recent years, in general medical field. In Nepal, there is widespread undersupply of specialist palliative care.

We have no reliable statistics, but it is a fair guess that more than 80% of cancer cases would be detected late, and would be incurable at the time of diagnosis. They all need palliative care; but very few—only in the capital and some cities outside—have access to palliative care now. This is mainly due to lack of awareness among professionals, administrators, and the public.

‘Palliative’ is derived from the Latin word ‘pallium’, a cloak. In palliative care, symptoms are ‘cloaked’ with treatments whose primary aim is to promote comfort. Its essence is poignantly reflected in a sentence from the Qur’an: “may you be wrapped in tenderness, you my brother, as if in a cloak.” In management of the person with disease, medical advances have achieved great mastery in diagnostic and therapeutic facilities—but mostly it has been very much a disease-oriented approach. It is certainly important to cure the disease when it is curable; but it is also important to look for other possible problems that decrease the quality of life. Hence, a paradigm shift is needed from a disease-based approach to ‘total care’—the holistic approach. This means that some exploration will be necessary to identify even problems that are not obvious. Financial concerns , social problems like burden induced by loss of employment, cost of treatment, social isolation, issues related to body image, psychological problems like depression, anger or denial in response to the illness, emotional isolation, interpersonal relationships within the family or burdens of guilt, spiritual pain(why me? Why did god do this to me? Or what is the point of my being alive?) are common factors which adversely affect quality of life. Unless we look for them, we may never find them. Cancer and terminal illness like AIDS always changes family psychodynamics, either for better or worse. When one person has a serious illness, the whole family suffers.

One of the daunting challenges and quizzical resistance people put forward is: “What can be done?” To address this issue, we must focus on education, drug availability and policy. Change is always resisted. Existence of proof of scientific advances does not always get translated to change in practice. Hindrances in developing a palliative service, in Nepal, are mainly due to lack of awareness among health professionals, administrators and general public. There are problematical deficits in education and the advanced training of all health care profession; for example, the subject palliative care is not compulsory in medical schools and is, therefore, only taught here and there.

Many times it has been seen that the public is more open to new ideas than professionals or administrators. Hence, it is very crucial to educate the general public. The mass media—the press the radio and television, hence, have a large part to play. Cancers hospitals and teaching institutions must bring palliative care to communities across Nepal. They must train health care professionals and the general public; must advocate increasing availability of low-cost, pain relieving drugs. In greater part of Nepal, there is still no access to necessary drugs. And the reality of poverty in Nepal mandates that the majority of patients get palliative service only if essential drugs are dispensed free of cost. In much of the world, palliative care came into being because of individual initiatives and action by some of the institutions .However, to achieve national coverage, palliative care needs to be integrated into general health care delivery system. Statements on potential measures to improve quality care in Nepal reflect the points of view of experts. By contrast, little is known about the views of the Nepal government.

Advocacy is very much essential for formulating the national policy. We need a firm and pragmatic strategy: right treatment; right patent; right time. One of the hindering factor towards strategies for better development of palliative care in Nepal is the attitude of decision –makers and stake holders: “Good idea but not feasible”. We must encourage the national health policy makers to participate in discussion forum and formulation of national policy because it is important for us to gain insight into the views of decision-makers and representatives from a wide range of socially and politically relevant groups. The awareness and content of palliative care should be increased on the part of those who are not specialists in palliative care.

Dr. Dhital is

Consultant, BPKIHS