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HEALTH TRIBUNE | Wednesday, June 28, 2000, Chandigarh, India |
Healing touch at life's sundown By Dr V.K. Kak EVERY medical practitioner, who has taken the Hippocratic Oath, should be committed to caring for the spirit of the terminally ill patients -- not merely their bodies -- and to improving the quality of life towards the end. Until the mid 1980s, the medical community had done little to improve the quality of care delivered to dying patients. However, general interest in end-of-life care has increased in the last decade. The public debate on the topic of physician-assisted suicide has shattered the silence regarding the care of the terminally ill. Good night!
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Healing touch at life's sundown EVERY medical practitioner, who has taken the Hippocratic Oath, should be committed to caring for the spirit of the terminally ill patients -- not merely their bodies -- and to improving the quality of life towards the end. Until the mid 1980s, the medical community had done little to improve the quality of care delivered to dying patients. However, general interest in end-of-life care has increased in the last decade. The public debate on the topic of physician-assisted suicide has shattered the silence regarding the care of the terminally ill. As physicians, we must impart honest information about the outcome, and help the patients and their relatives plan for their final days. We must listen to them when they describe what they value and what they need. We must provide compassionate psycho-social support for families struggling to do what is right for their dying loved ones. These are not simple goals. In trying to achieve them, we must acknowledge our own fears about death and dying. Hospice: It is a safe, coordinated programme of palliative and supportive care, in a variety of appropriate settings, from the time of admission through bereavement, with focus on keeping the terminally ill patients in their own homes as long as possible. Many times, people think that hospice care in a nursing-home setting is a duplication of effort. Yet hospice addresses psychological, social, religious and cultural values in addition to functional issues. Hospice care has been traditionally acknowledged as a component of oncology care, regardless of its degree of integration or type of relationship with the oncology service. The most common model is one of collaboration with a free-standing hospice that contracts with hospital-based oncology programmes. However, the financial and customer-focused pressures of today's health-care environment pose a challenge to determine ways to preserve hospice's essential values of compassion and commitment to the real needs of the dying patients. Hospice's current and potential allies and partners must understand the day-to-day realities if they are to encourage the preservation of its core goals and values. The health-care environment is changing at a pace that few could have predicted. Hospice care is very much a part of that change. Despite the challenges, partnership among hospices, delivery networks and managed care organisations will be critical to the continued expansion of access to hospice care and to ensuring its availability to those in need. Palliative care: Palliative medicine/care is the study and management of patients with active, progressive, far-advanced disease for which the prognosis is limited and the focus of care is the quality of life. It recognises the multidimensional nature of suffering, responds with care and addresses all aspects of suffering. Palliative care originally referred to the care of patients with terminal illnesses, but now it refers to the care of patients with life-limiting illnesses, whether or not they are imminently dying. Philosophically, the relief of suffering and the enhancement of a patient's quality of life are primary objectives of both hospice and palliative care. General hospice and palliative care approaches are similar and may be provided along the course of illness to patients with advanced non-curable diseases. During the early stages of a serious illness, treatment is generally aggressive and the major goal is cure. As the illness progresses, the burdens of traditional medical therapies may begin to outweigh their benefits. The patient and/or the physician may then emphasise different treatment goals. In the initial active treatment phase, reversing the course of disease is usually the primary objective and such unfortunate sequelae as pain and anxiety, whether disease -- or -- treatment related, are tolerated and even accepted by patients, families and physicians. Later, in the course of the illness, if the patients and the physicians come to accept that the probabilities of survival and returning to acceptable levels of function are increasingly unlikely, a transition to palliative/supportive care may occur. The goals of treatment may then shift to the relief of symptoms, psychosocial support and other aspects of palliative care. The transition period from traditional curative care to palliative care can be one of the most difficult phases of caring for patients with life-limiting illnesses. Nevertheless, when cure is not possible, treatment goals appropriately change from emphasising life-prolongation to stressing symptom-control and the quality of life. With this approach, patients may remain as comfortable as possible throughout the entire illness trajectory. As our population continues to age, we will be faced with a greater number of patients with advanced life-limiting illnesses. Health-care professionals will feel an increasing need to provide optimal care for these patients. In order to improve end-of-life care, people with advanced potentially fatal illness and those close to them should be able to expect and receive reliable, skilful and supportive care. Health professionals must commit themselves to improving care for dying patients and to using the existing knowledge effectively to prevent and relieve pain and other symptoms. Educators and others concerned should initiate changes in undergraduate, postgraduate and continuing education to ensure that the practitioners have relevant attitudes, knowledge and skills to provide appropriate care to dying patients. Palliative care should become, if not a medical speciality, at least a defined area of expertise, education and research. Psychological considerations in terminal care: One of the most frequent complaints of hospice patients and their families is the poor manner in which their prognosis was conveyed. Anger, of course, is a common and natural response to bad news. Even though it may slightly distort their perception, many patients distinctly remember how they learnt of their terminal condition, and their detailed descriptions do not put us (physicians) in the best light. Informing the patient about a terminal prognosis is one of our most challenging responsibilities. Unfortunately, this skill is seldom taught to medical students or Residents during their training. It does not even merit the traditional approach of "See one, do one, teach one". Few medical textbooks or even books on end-of-life care offer any clue on this subject. After informing the patient about the terminal prognosis, the physician must always pledge to be available to explore all therapeutic options and honour all the wishes of the patients. Despite our best efforts, though, some patients may experience psychological distress during the last weeks of life, which can still be a time of change and development. In her pioneering work in 1969, Elizabeth Kubler-Ross introduced the concept of the five stages of dying -- denial and isolation, anger, bargaining, depression and acceptance. Some patients will go through only one or two of these steps before acceptance, while others will never achieve it. The critical concept for physicians is that dying is not merely an isolated event; it is a process. Because of the dynamic changes associated with this process, we must regularly re-evaluate the patients and family members for signs of psychological distress and family conflicts. We have to adjust the frequency of these evaluations for each patient, depending on personal needs, social support, the nature of the illness and the prognosis. A physician must be available to dying patients and their families, and he should try to bring the traditional medical values of altruism, compassion, courtesy and accountability to the doctor-patient relationship. This type of care requires a lot of intellectual and emotional intensity. Working with an interdisciplinary team, as in a hospice, can provide the physician with a variety of approaches to caring for the terminally ill. Helping dying patients cope with psychological and social issues can be tremendously rewarding, and may serve as a reminder as to why you went into medicine as a profession in the first place. The Irish model: Institutions providing inpatient hospice care as well as multidisciplinary teams dispensing hospice care at home have been a long-standing tradition in Ireland. The essential elements of this care include the relief of pain and other disease and/or treatment-related symptoms, and the support of the physical, psychological and spiritual resources of the patient and the family in order to help them come to terms with death. Interest in developing high quality hospice and palliative care must be shared by health-care professionals, the public sector and government agencies. There is a great need to initiate education and training courses in hospice care and palliative care, to establish multidisciplinary care teams, and to establish home-care teams by institutions providing inpatient treatment to ensure the continuity of care. Nurses working in the home-care team would act in advisory and supportive roles, consulting the primary care team on issues related to palliative care and provide the much needed support to patients and their families. We need to establish "respite-care units", providing outpatient day-care and inpatient "hospice units" in addition to palliative care home teams. Such facilities would require to be appropriately funded by government as well as non-government organisations. The establishment and maintenance of high standards of hospice or palliative care services would be helpful in attaining the goal of a holistic and humanistic approach to the care of the dying patient in the presence of highly technical medical care. The Indian scene: The hospice movement is still in its infancy in India. It is restricted to a few centres only. The late Dr Jussawala, a former Director of the Tata Memorial Hospital, Bombay, established a rehabilitation centre for patients undergoing the removal of the larynx (voice box) for cancer, with a view to training them for oesophageal speech. It led to the development of one of the biggest hospice and palliative care hospitals, "Shantivedana", under Dr D'Souza in Bombay, in the early 1980s. It provides a pain relief and rehabilitation programme for cancer patients. The hospital has started a branch in Delhi also under the same name. Another centre, under the management of the Kidwai Memorial Institute of Oncology, Bangalore, has been functioning with the help of some volunteers and NGOs, and with the support of the W.H.O. for pain relief with morphine tablets. Similar facilities for the W.H.O.-supported Pain Relief Programme are available at the Regional Cancer Centre, Thiruvananthapuram. However, it must be remembered that other modalities of treatment including palliative surgery, radiation therapy and chemotherapy are also needed in such programmes. The Global Cancer Concern, based in London, is associated with providing palliative care in cancer hospitals as well as through some NGOs. Its main aim is to train an adequate number of personnel, particularly nurses, for palliative care. The potential sources of suffering experienced by patients with advanced non-curable diseases are not limited to pain and physical symptoms. Multiple psychosocial and spiritual issues can, and do, affect a patients quality of life near the end of life and need to be appropriately addressed. Several western societies are now facing a critical discussion on the application of physician-assisted suicide. Current research suggests that in addition to addressing physical pain and symptom-control, attending to issues of depression, social support and other psychosocial issues can reduce the suffering and perhaps the number of requests for assistance for suicide in patients near the end of life. Many physicians believe that once therapeutic options have been exhausted, nothing more can be done for patients with advanced disease. Unfortunately, this attitude deprives the patients, their families and the physicians themselves of the opportunity to find comfort and to experience the benefits of care that, even if provided in the patients home, may be as intensive as that provided in a hospital. The key to a well-managed end of life is careful attention to the changing goals of treatment from curative to supportive, early enough in the disease process, to allow the patients and their families the time to benefit from palliative care. When events are managed well in alignment with the patient and family preferences, all participants may come to remember the end of life as a time that can be challenging, but is often extraordinarily meaningful. Professor Kak is
the Director-Principal of Government Medical College and
Hospital, Chandigarh, and Secretary of Medical Education
and Research of the U.T. Administration. |
Why do we sleep? Sleep rests and restores our bodies. The brain and the body's metabolic processes require regular periods of rest to recover. Growth hormone is released while you sleep to renew tissues and produce new bone and red blood cells. Dreaming may also help the brain sort out information stored in the memory during waking hours. How to get your child to sleep If a full stomach does not settle your baby down for sleep you could try gentle rocking or a lullaby. Setting a regular sleeping pattern is important too. Do not overstimulate your baby during night-time Feeds; keep the lights low. For older children, establish a bedtime routine, such as a story before bed. Drs S. Carrol & T. Smith |