Caregiving Institutions administrators
Palliative care is that care which aims at making patients more comfortable during the duration of their illness or treatment. In recent times, palliative care has become more and more synonymous with the end of life care for . This is because these patients are mostly known to be under insufferable pain. Since the illnesses are incurable, the only available remedy is the management of their condition by enhancing comfort, holism, open communication, and support. Palliative care practices relieve terminally ill patients and improve the quality of their end of life (Seshamani & Gray, 2004). The practices also provide encouragement to the families of the patients as well as the psychological preparedness for the forthcoming death of their beloved.
During the duration of the existing terminal illness, the patients and families are in distress; hence, care should be taken not to aggravate their situations further. Conscious decisions do not only have to be made by all parties involved but have to be communicated in a way that is as comforting as possible and which shows that the patient and their families interests are supreme.
The proposed study wishes to study palliative care in the context of terminal illnesses to understand how well medical teams handle communication with the patients and their families. More specifically, the researcher would want to understand how a decision regarding how the patients are handled from the time the observation that palliative care would be the best course of action is made, to the actual care and end of life itself.
Once a patient is faced with a terminal illness scenario, stakeholders like the patient, family, friends, and the medical staff have all to be prepared to face and accept the eventuality of death. These are presented with a dilemma between prolonging life (delaying death) or enhancing life and accepting death as part of life (Rosenberg, Lamba, and Misra, 2013).
According to the National Council for Palliative Care (2013), the shift from a curative approach to focusing on the end of life presents difficulties no matter how well the patient has embraced the eventuality of death. Human rights apply to every human being no matter their status in life. In end-of-life care, these rights are more important because the decisions to be made are more borderline and action may infringe on a number of these rights without it being deliberate (Javashavli, 2010).
The right to information is also very important. A patient should be informed about all the factors related to their illness, the available treatment options, and the likely prognosis. This information will help the patient in making an informed choice regarding their future treatment. The medical practitioner should also inform the patient if he/she feels that treatment is an exercise in futility.
One of the major concerns in end of life care is the patients autonomy (Javashavli, 2010). Autonomy is an inalienable right that respects that one has the ability to decide for oneself. A patient gets informed of all options available to him/her, and the prognosis of his illness. Further deliberations on the issues help them form an informed decision on the nature of the care they wish to have. Autonomy also requires that the decisions made by the autonomous individual be respected across the board.
Another issue that arises in terminal palliative care is beneficence and non-malfeasance. Patients are supposed to be ethically treated, protected from harm, and have their wellbeing secured. The benefits of continued curative costs measured against the costs and the possible harm to patients as well as prolonged life constitute the principle of beneficence in this case. According to Prof. Robin Taylor, the preparation for death could be more beneficial than clinging on to a life that is devoid of quality and that though the curative team might have good intentions, the outcome could most likely be totally different (Robin, 2012).
In all these aspects of palliative care, one issue remains constant, all the decisions made have to be communicated. It is, therefore, right to conclude that how this communication is made will have a significant bearing on how the decisions will be taken, and how every stakeholder will react. It is, therefore, important that this aspect of the decision implementation process be analyzed with the intention of guiding caretakers in the future. The proposed research will in this case concern itself with the study of how the method and skill of communication affect all stakeholders, and mostly the patients and their families.
Significance of the study
The study will be helpful to many stakeholders but will be of more significance too:
By understanding how communication between patients, their families, and their handlers occur, policymakers will have a firm grasp on the various effects the different approaches have on the stakeholders. This will be a useful step in the formulation of a best practice policy framework that in the future.
Caregiving Institutions administrators
This group is in charge of the of the actual setting where most of the communication occurs. By understanding how affect certain parties, the administrators will be able to impress their teams to handle communication in a more sensitive manner, thus lessening the distress caused to the families and patients.
The general public
Though not everyone will have to interact with palliative care during their lifetime, many people will do so either as patients or as relatives to affected patients. With this in mind, it would be desirable if one would be assured of a sensitive caregiver who would be sensitive to the difficult situation that these situations always present.
Objectives of the study
To develop a concise understanding of how caregivers communicate with their charges.
To observe how effective (or not) the various methods are in communicating the decisions made regarding the patients, and in managing the sensitive nature of the patients and their families.
To observe whether different groups of stakeholders (mostly families of different patients and these patients) react in the same way to certain communication methods, or if the response and methods ought to differ from group to group