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Background material by Professor Omar Hasan Kasule Sr. for Year 3 Semester 2 PPSD session on 18th March 2008
WHY PALLIATIVE CARE
Palliative care is resorted to when clinical evidence indicates that there is no net benefit from life support or conventional treatment.
THE CONCEPT OF GOOD DEATH
A motivation for improving palliative care is the concept of good death. Whereas death in inevitable, much can be done to make the death process as comfortable as possible. The comfort may be physical involving pain relief and general tender loving care. It may also be psychological involving allaying anxieties and fear of death among the terminally ill.
THE CONCEPT OF PLEASANT DEATH
The tables could be turned around and the terminal illness can become a pleasant moment. This is because terminal patients are resigned to their fate and are no longer concerned about the routines of life and the anxieties of living and achieving that prevented them before from thinking of loftier and nobler objectives. They realize that they cannot make any more material achievements (wealth, power, and fame) nor can they have any major impact on the world and its affairs. They therefore have time to themselves for reassessing their past in an objective and detached way and with no pressure or haste. This is the time when nobler hitherto hidden human qualities to surface. The terminally ill can forgive those who wronged them. They can afford to be generous to their enemies. They can seek forgiveness for any harm they caused others. And finally and above all they can make peace with their creator.
NOBLE HUMAN QUALITIES
The Qualities of patience, resilience, perseverance in facing pain and certain death appear in the patient who has surrendered to Allah knowing that the end is near. A surrendering patient gets great reward from Allah because he stays composed, calm, and reassured despite the poor disease prognosis. This in a way is human victory against adversity and despair. Only humans are able to maintain a calm state of mind in difficult situations. Animals react in an appropriate way to adversity by agitation and fear.
THE HEREAFTER
The realization that earthly life is soon coming to an end opens the mind to the alternative life of the hereafter. In good health people hear about the hereafter and talk about it but they are so busy in the pursuit of material pleasures and possessions that they give it no thought. Terminal illness provides an opportunity to think about the life in the hereafter that can be better than life on earth for the righteous. The prophet Muhammad like all prophets before him was given a choice between life and death and voluntarily chose death.
GUIDING PRINCIPLES ON TERMINAL CARE
The following is a summary of guiding concepts on illness, death, cure, and the etiquette with the terminally ill that form the basis for palliative practice. Illness is not all negative; it has positive human aspects. Death is not a terminal event; it is a transitional event from one state of existence to a better one. The cure of illness or death is in the hands of God; the healthcare givers' role is to make ensure that the remaining lifetime has the highest quality possible. Health care workers must provide a total package to the terminally ill that addresses physical, psychological, spiritual, and legal needs. They should also be involved in the continuum of events before and after death including the burial and mourning processes. The physician bedside visit has both social and professional aspects and should strengthen the patient psychologically. Spiritual preparation to face death involves repeating teachings of Islam on the nature of disease, death, and the hereafter. Caregivers should guide and participate with the relatives and friends through the processes of mourning which include preparation of the body for burial, the burial itself and the post-burial period. This all-round concern and participation of the caregivers with the patient and he relatives are a demonstration of total care. It comforts the living that when his or her turn comes somebody will care.
DEVELOPMENT OF PALLIATIVE CARE
From a historical perspective, palliative care was not an important concern of health care workers for several reasons. In the absence of effective medical and surgical interventions, illnesses were rapidly fatal with little time left for palliative care. The demands on health resources were always so high that preference was always given to the living and the terminally ill were neglected to their fate. It was only the family members who undertook palliative care to the best of their abilities. It is the family-oriented palliative care that has created cultural barriers to seeking professional palliative care. They reason that only the family can care for the dying. Family-oriented palliative care is becoming difficult in today’s industrialized society because the extended family has virtually disappeared and the few members of the nuclear family are busy in their occupational pursuits leaving nobody at home to care for the terminally ill. Thus the need for professional care at freestanding hospices or hospital-based hospices. A compromise has also been struck in some cases by professional palliative care within the home.
RESOURCES FOR TERMINAL CARE
A pertinent question may be asked: why expend resources in palliative care when we know that the person is terminally ill? There are several ways of justifying palliative care. It is part of respect for human dignity that a person dies in as comfortable a status as possible especially without much pain. The relatives also want to feel that they have done all what they can for the terminally ill and that they have mitigated the suffering of the last moments. The terminally ill of the family may be wealthy and have the resources to pay for expensive terminal care in which case the issue of limitation of resources does not arise.
In an era of scarce resources, arguments have been made that the elderly consume disproportionately high resources. It may also be argued that the economic utility of the elderly is low. This is most unethical. The elderly have as much right to health care resources as are the young. The difference may lie in the fact that the elderly may not benefit from some measures in which case it is not useful to undertake them.
SITE OF PALLIATIVE CARE
Palliative care can be in the home, in a hospice section of a hospital, or in a freestanding hospice. Home care has the advantage that the patient feels at home in familiar surroundings. The family also feels empowered to do something for their loved one. Hospital-based hospice care has the advantage of drawing upon specialized resources and skills that are not easily available at home. It is however too formal and the family members may not feel confortable. Community gerontological services can also play a role. There are also day care facilities that allow the patient to receive specialist institutional care during the day and to be with the family at night.
PALLIATIVE CARE TEAM
Team-work and a multi-disciplinary approach is necessary. The role of physicians and nurses in hospice care includes communication with the patient and the family. They also must provide emotional support for the patient and the family.
MODALITIES OF CARE
Pain control: Many patients suffer from pain; powerful analgesics are needed including opiates. The essential drugs for palliative care are non-opiates like paracetamol, mild opiates like codeine, and strong opiates like morphine. Usually pain relief starts with non-opiods like paracetamol or the non-steroidal anti-inflammatory drugs (NSAID). If the pain persists weak opiods are used. If it still persists strong opiods are used.
Spiritual preparation: Recitals and supplications are needed in addition to pain control.
Emotional and psychological support: The palliative care team must empower the patient, the carer, and the family. It has to deal with family conflicts and confusions that arise due to the stress of the illness. The family needs help to cope with the situation. They need guidance to go through the process of grief and bereavement successfully. Social support groups can also play a role.
Communication: Patients need information about their condition. Physicians must provide information honestly and tell the whole truth unless there is a legally-valid reason for not disclosing some information. Information should not be given to patients who have indicated they do not want to know. Patients should be helped to face reality. False optimism should be avoided. Patients should be told which information is certain and which information has uncertainty. If the patient is competent no information or discussion with the next of kin should be done without informed consent. The physician should use his judgment in communicating with the next of kin of incompetent patients.
Symptom management: Constipation, diarhoea, dysphagia, dyspepsia, nausea, vomiting, anemia, cachexia, hypercalcemia, hiccups, pruritis, dypnoea, cough, hemoptysis, incontinence, hematuria, depression, sadness, anxiety, confusion, weakness, convulsions. Sedatives and analgesics given for pain relief may give rise to a double effect situation in which doses of analgesics sufficient to kill pain may lead to respiratory depression.
Nutrition support: The wishes of the patient regarding food should be respected as much as possible. In many case some form of artificial feeding will be necessary.
ETHICAL AND LEGAL ISSUES
Requests for assisted death should be refused. Telling the whole truth to the patient requires judgment and balancing benefits and harm. Privacy and confidentiality have to be maintained. Caregivers must respect the patient’s autonomy as long as he is competent. If the patient is not competent to make decisions, his guarsian, wali, will make decisions that the caregivers are bound to respect.