Improving or Enhancing Quality of Life - Research Paper Example

 Introduction: This paper focuses on the care provided to a terminally ill patient and the possibility of improving or enhancing the quality of life of the patient through the use of conventional and complimentary therapies that impact of the care on the quality of life of the patient. The conventional and complimentary therapies considered will be based on the framework of Patient-Centered Approach as put forward by Kitwood 1997. The patient was a Catholic priest aged 78, who was transferred from the oncology acute care center to palliative care. In the oncology acute care center the diagnosis was advanced stage IV aggressive Non-Hodgkin Lymphoma (NHL) with severe bone marrow depletion. Chemotherapy was the only treatment considered for the progressive disease (Anderson-Reitz, 2006). The advanced age of the patient and the advanced stage of the progressive disease cause the clinicians to rule out any of the more aggressive interventions like bone marrow transplant (Saha, 2001). The response to chemotherapy was not satisfactory and with no more treatment options remaining in consultation with the patient and his relatives the decision to move him to palliative care facilities in the hospital for the required support in the remaining days of his life was made. Background of Support Provided at Palliative Care The patient arrived at the palliative care center requiring assistance to move around, conscious and with slight fever. He complained of shortness of breath, pain and discomfort. The primary concerns initially with the patient were addressing his shortness of breath, weak condition and low blood count of red blood corpuscles, white blood corpuscles, and platelets. Dyspnea as demonstrated by the patient is a frequent occurrence in patients under palliative care (Indelicato, 2006). The protocol for managing dyspnea in this health care institution is three fold. The first consists of providing oxygen to reduce the hypoxemia being experienced and providing positioning support through the elevation of the head and chest of the patient. The second is providing therapeutic support through bronchodilators given through a nebulizer. The final step is to identify the cause of the respiratory discomfort and treat the cause. Infection was considered to be the cause of the dyspnea and so a course of antibiotics was prescribed by the clinician. It was also decided to restrict visitors, as visitors were considered to be a possible route for transmission of infection to the patient. A significant feature of the treatment regimen was the consideration of the clinicians that these were the only steps taken in the management of pain and discomfort demonstrated by the patient. Addressing his weakened body condition due to poor intake of food and fluids was also taken on a priority basis. Since the patient showed reluctance to consume food and the required fluids, it was decided to provide parenteral nutrition through infusions as a therapeutic option (Zanuy et al, 2006). Central venal catheterization was decided due to the collapse of all the accessible veins in the upper and lower limbs, as a result of the numerous parenteral infusions had been through. Furthermore in view of the frequency and nature of infusion fluids and drugs, infusion protocol in the institution called for central venal catheterization (Taylor & Palagiri, 2007). On the basis of nursing initiatives a dietician became a part of the multi-disciplinary team to advice the family on enhancing the nutrient content in the limited food and fluid intake of the patient. The low blood count of red blood cells, white blood cells, and platelets needed to be addressed on a regular basis. Blood count was monitored on a daily basis and blood transfusion and platelet transfusion initiated, when the blood count was low. The impact of the side effects of the chemotherapy given to the patient was also considered. Neutropenia and infectious complications are the most potent side effects that could result from chemotherapy. Since hematopoitec support and an antibiotic regimen were already a part of the palliative care being provided, no additional steps to manage these possible side effects were taken (Anderson-Reitz, 2006). The functioning of the major organs of the body was monitored regularly through the measurement of blood parameters and other physical evaluation methods. The factors of restriction of the patient to the bed, advanced age, and poor nutritional status raised the relevance of pressure ulcer preventive strategies. Under guidance from nursing steps to maintain body hygiene including application of talcum powder and reducing moisture on the body were taken. In addition guidance from nursing was provided to reduce shear and friction on the body during changing of bed linen and clothing and the prevention of continued pressure at specific points of the body. Inspection of all parts of the body likely to develop pressure ulcers was also undertaken to evaluate for any initial signs of the onset of pressure ulcers (Reifsnyder & Magee, 2005). Assessment of Palliative Care Provided An objective evaluation of the palliative care provided will show that the focus of the supportive care was on the disease and the consequences of the disease rather than the patient and thereby reduced the quality of life from the perspective of the patient. It may be argued that by concentrating on the consequences of the disease and attempting to manage them the clinicians were attempting to improve the quality of life the patient. The question that needs to be answered here is who is the best judge of the elements that improve the quality of life of the patient? Is it the patient or the health care service providers that include the clinicians and the nursing professionals? The obvious answer is the patient. From the care provided, there was no attempt to ascertain the views of the patient on this subject. Furthermore the clinicians refused to consider the use of analgesics or sedatives to address the pain and discomfort experienced by the patient, which from the perspective of the patient were his primary requirements. It is this subject of the insufficient attention paid to removing the pain and discomfort that will be the focus of the paper as it evaluates the meaning of patient- centered care. Patient-Centered Care Person centered care owes its place in patient care to Tom Kitwood, who developed this approach to the care of patients, which has emerged as a key concept to improve care provided to all kinds of patients. Elements that make up this concept are personhood, knowing the person, maximizing choice and autonomy, comforting, and a supportive physical organizational environment. This has led to a framework for patient centered care that begins with assessment of the personhood of the patient, communication to know the person and understand the choice of the person in terms of care needs, so that the autonomy of the patient becomes a part of the care provision, and implementing care based on comfort needs of the patient. (Crandall, et al, 2007). This framework of patient-centered care as provided by Crandall et al, 2007 essentially makes the focus of care on the patient and not the disease or the consequences of the disease. All the elements of the framework are targeted towards understanding the care needs of the patient from the perspective of the patient and them implementing it upholding the autonomy of the patient. Pain and discomfort management in the case of the patient from the perspective of patient centered care was unsatisfactory, as the clinicians refused to employ sedatives to ease the discomfort of the patient, in spite of the constant complaint of pain and discomfort by the patient and the repeated requests from some family members supported by the nursing professionals. Evaluation of patient care needs made it clear that a primary requirement in the care of the patient was easing the suffering from pain and discomfort, which would have been possible, if the conventional therapy of medication in the form of sedative was employed. Rationale for the Use of Palliative Sedatives Prior to an evaluation of the evidence available to support the use of sedatives in palliative care, let us examine the use of sedatives in palliative care from the ethical and quality of life perspectives of patient-centered care. Bruce, Hendrix & Gentry, 2006, point out that pain and discomfort from dyspnea are commonly experienced in palliative nursing care and yet is not often effectively alleviated. Therefore there is continuing experience in palliative care that alleviating pain and discomfort is a primary requirement in palliative care. Use of sedation is a conventional therapeutic option for alleviating pain and discomfort. Palliative or controlled sedation is recommended when refractory symptoms cannot be controlled adequately through other therapies in terminally ill patients to reduce their suffering (Bruce, Hendrix & Gentry, 2006). The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO Definition of Palliative Care). This definition of palliative care differentiates palliative care from other fields of medical care. In other forms of medical care the focus is on the disease by trying to remove the disease from the body of the patient or to try and arrest the progress of the disease and thereby extend the life of the patient. In palliative care no longer is the disease or the progress of the disease an issue of concern, for its progress and conclusion is known and accepted. The focus is on the physical and psycho-social issues that are part of the patient in this final journey of life (Coyle, 2006). Patient centered care with its focus of care on the patient and not the disease gains in relevance in palliative care and so too the use of sedation to alleviate the physical discomfort of the patient. Sedation was an option that was not considered till the final stages of the life of the patient. If it could be used at this last stage on the journey of the patient in palliative care to ease the pain and suffering of the patient, it could have been used in a controlled manner in the earlier stages to alleviate the pain and suffering of the patient throughout the journey in palliative care. The principle of autonomy in medical ethics require that all the available therapeutic options be discussed with the patient and the patient be made a part of the decision making process in the management of the condition of the patient (Valente, 2004). By denying this right of the patient to know and be part of the decision making process not only were medical ethics transgressed, but also there was neglect of the objectives of palliative care, which is to strive for the best quality of life for the patient in the limited span of life that is left (Claessens, et al, 2007). Paice and Fine, 2006, point out that pain and discomfort have high prevalence in palliative care and the interventions against pain and discomfort have to be aggressive, with the use of sedation where necessary. Bruce, Hendrix and Gentry 2006, define palliative sedation as “as the monitored use of medications to relieve refractory and unendurable symptoms by inducing varying degrees of unconsciousness-but not death-in patients who, given their disease state, progression, and symptom constellation, are expected to die within hours or days”. There are certain factors that guide the use of palliative sedation. These factors include the patient suffering from a terminal disease; the symptoms of the patient, like pain or dyspnea should be beyond the bearing capacity of the patient and refractory; and death should be maximum a matter of days not weeks or months. The last factor is the most difficult to evaluate. Thus the core factors involved in the use of palliative sedation is the presence of severe distress that has not responded to standard palliative care and objective in the use of the sedative medications is relief of the severe symptoms trough the reduction in the level of consciousness (Bruce, Hendrix & Gentry 2006). Some of the possible sedatives employed in palliative sedation or controlled sedation are opioids, benzodiazepines and barbiturates (Taylor & McCann, 2005). Propofol an intravenous general anesthetic agent is also used for palliative sedation. The benefits of using Propofol include a well understood mode of action; rapid onset of action and a half-life of approximately one hour. This profile of the drug makes it suitable for palliative sedation, as there is rapid symptom relief and ease of titration, which maximizes comfort to the patient and minimizes side effects to the patient. It makes it easy to control the level of sedation and the control can be established quickly through the titration of dosages continuously. The disadvantage with Propofol is the lack of any intrinsic analgesic effect from the drug and if patients are on opioids, it will have to be continued. Side effects normally associated with medications used for palliative sedation include respiratory depression, hypotension and hastening the onset of death (Krakauer et al, 2000). Evidence on the efficacy and safety of in the use of sedation in palliative care is provided by Morita et al, 2005, from their study that explores the efficiency and safety of palliative sedation and factors that might influence the inadequacies of symptom relief and complications. More than eighty percent of patients given palliative sedation were deeply sedated within an average period of sixty minutes. Nearly fifty percent of the patients awakened from their deep sedation for periods that were a minimum of one hour, making it necessary for adequate monitoring of patient consciousness and levels of distress. In eighty percent of the patients the use of palliative sedation proved to be safe, but in four percent of the patients death was brought on by the complications from palliative sedation. These figures demonstrate that palliative sedation is normally safe and there is no basis for the concern of clinicians and family members that palliative sedation shortens the remaining life of the patient. Yet, in case palliative sedation is used, from the perspective of efficacy and safety close monitoring is called for (Morita et al, 2005). This evidence demonstrates that objections to the use of palliative sedation do not stem from issues of efficacy and safety and the basis of the objections lies elsewhere. Clinicians are uncomfortable with palliation because of the misconception that it is similar to patient assisted suicide. In physician-assisted suicide medication is prescribed for the patient to be used when chosen, with the express intent of ending the life of the patient. Whereas, in palliative controlled sedation the physician prescribes and monitors the medication, making adjustments appropriately to make sure that pain and distress are minimal to the maximum extent, thus improving the quality of the limited life period of the patient. The intention of palliative controlled sedation is relief of the suffering and improving the quality of life of the patient (Bruce, Hendrix & Gentry, 2006). The difference between physician assisted death and palliative sedation on is better clarified on the basis of the doctrine of double effect, which finds its roots in Roman Catholic theology. It becomes relevant when harmful effects just cannot be avoided in the care of a patient. The doctrine of double effect clearly distinguishes between an intended affect and an unintended effect of an intervention. In physician assisted death the intended effect is death, whereas in palliative sedation the intended intention is relief pain and discomfort and death a possibility as an unintended effect (Bruce, Hendrix & Gentry, 2006). Carr and Mohr, 2008, using the same doctrine of double effect differentiate between physician assisted death and palliative sedation on the basis of the three factors of good effect intended, action taken and bad effect foreseen. In physician assisted death the good effect intended is the end of pain through death, with the action of medication using a lethal dose that has the bad foreseen effect of death. In palliative sedation the good effect is the end of pain through unconsciousness, with the action of medication at non-lethal dose levels and the bad effect foreseen is unconsciousness. Death finds no place in the intended effect or the foreseen effect in the case of palliative sedation (Carr & Mohr, 2008). This linking of palliative sedation as a means to promote death also has repercussions on the way thoughts of the family members in case there are strong religious feelings against promoting death in any manner, as was the case with this patient, who was a Roman Catholic priest. For palliative sedation to be accepted the clinicians would have to assess the morals and ethical thoughts of the family and remove any false impressions that palliative sedation is akin to physician assisted death for it to be acceptable to the family members (Seymour, et al, 2002). Palliative sedation is effective and safe and the only arguments against it stem from the misconception among clinicians that palliative sedation promotes. Carr and Mohr, 2008, p.80, put palliative sedation in the right perspective of palliative care, when they argue in its favor saying “to fail to include palliative sedation as the final expression of palliative care would be patient abandonment even if the care team never leaves the patient’s side”. Rationale for Complementary Therapy – Prayer The conventional therapy chosen was palliative sedation, which addresses the alleviation of physical distress of a patient in palliative care. There is a psycho social dimension to palliative care. Prayer and spirituality address this dimension of palliative care, which may offer therapeutic benefits to the patient in reducing physical discomfort (Chochinov et al, 2004). The use of complementary and alternative medicine (CAM) is popular. In the United States of America there has been an increase in the money spent on CAM since the 1990s. Estimates of American public spending on CAM show that between $36 billion and $47 billion were spent on CAM in 1997 (Barnes et al, 2004). The use of prayer and spiritual practices to promote health and well-being is not new to human civilization. It has come down since ancient times and comes from the perceived link between mind and body. In spite of this ancient connection in the use of prayer to promote health and well-being, there is limited exact knowledge on this aspect of complimentary therapy. In the United States of America, the National Center for Complementary and Alternative Medicine (NCCAM) has initiated support for research to establish a more exact body of knowledge. (Prayer and Spirituality in Health: Ancient Practices, Modern Science, 2005). The multiple dimensions involved in palliative medicine make it hard to consider it as a pure medical discipline and hence solutions to the problems of some of the dimensions of palliative medicine may not emanate from medical science. Yet the importance of spirituality as a key component to psychological well-being is gaining ground in the field of medicine. There is increasing data that gives empirical support for the hypothesis that spiritual strength has a positive impact on psychological functioning and the making of adjustments to illnesses. Psychological distress is natural and common in of end-of-life situations, as in palliative care and the development of spiritual strength through prayer provides a means for coping with the distress of the terminal illness and the prospect of death (McClain, Rosenfeld, & Breitbart, 2003). Prayers assist in developing spiritual strength, particularly in palliative care, where there is proximity of death and the level of physical distress is high. In such circumstances, where there is spiritual strength and maturity individuals tend to turn to God for salvation from these earthly miseries. There gradually evolves greater reposing of faith in the Almighty and the will of God. Prayers provide solace at these times (Kacela, 2004). Assessment of Patient Prior to Implementation of Therapies The WHO definition of palliative care provides the three dimensions of physical problems, psychosocial problems and spiritual issues that need to be the concern of palliative care ((WHO Definition of Palliative Care). Thus assessment of the patient needs to be focused on these aspects of palliative. Pain and dyspnea are the most frequently encountered causes of physical distress in palliative care (Indelicato, 2006). Thus makes the key elements in the assessment of physical distress as pain and dyspnea. Herr and Garand 2001, have a suggested the use of a six level pain scale starting with no pain at the lower end and ascending through slight pain, mild pain, moderate pain, and severe pain to extreme pain at the highest level. A similar scale can be employed to measure breathing discomfort in dyspnea. It may not be possible to use the patient’s individual assessment of pain and dyspnea at all times, hence the application of the pain and dyspnea scale will have to be based on the observations of the patient. Detailed history of the patient would be collected from the family of the patient and analyzed to provide a picture of the social support available and the deficits. Communications with the patient will be used to evaluate the psychological and spiritual status of the patient. These assessment activities would give a fairly clear picture on the support that the patient would require on the different aspects of palliative care as found in the definition of palliative care to improve the quality of life of the patient. Planning, Implementation and Evaluation of Therapies: From the perspective of conventional therapies the initial steps would be the use of strong analgesics to try and control pain, with the use of the institution protocol for managing dyspnea, which is a three step protocol. The first step consists of providing oxygen to reduce the hypoxemia being experienced and providing positioning support by elevating the head and chest of the body. The second is providing therapeutic support through bronchodilators given through a nebulizer. The final step is to identify the cause of the respiratory discomfort and treat the cause. Subsequent to initiating of these steps the patient’s condition would be monitored to ascertain success of these relief measures. Care givers would be educated and trained to on the signs to watch out for deterioration of condition of the patient, with instructions to alert nursing immediately. Social support and spirituality were the strengths of this patient. Communion was given by the local parish on a daily basis and there were a stream of members of the clergy and laity coming in to offer prayers and support. It was also noted that during these times of prayers the patient demonstrated less discomfort. Hence prayer sessions were to be encouraged and meaningful religious items like the cross would be kept in the room. . Palliative sedation was to be initiated when all conventional therapies to reduce pain and dyspnea were beginning to prove futile. Palliative sedation would be used as the means to provide relief from pain and dyspnea. Dosage of the palliative sedative would be titrated to provide for minimal dosage of sedative for the required sedation. The consciousness level of the patient would be monitored continuously. This is essentially a task for nursing, but care givers and family members would be trained to monitor consciousness levels, so that additional support would be available in the monitoring of the patient. Literary References Anderson-Reitz, L. (2006). Dose-dense Chemotherapy for Aggressive Non-Hodgkin Lymphoma. Cancer Nursing, 29(3), 198-206. Barnes, M. P., Powell-Griner, E., McFann, K. & Nahin. L. R. (2004). Complementary and Alternative Medicine Use Among Adults: United States, 2002. Vital and Health Statistics, 343, Retrieved October 3, 2008, from, CDC http://nccam.nih.gov/news/report.pdf Bruce, D. S., Hendrix, C. C., Gentry, H. J. (2006). Palliative Sedation in End-of-Life Care. Journal of Hospice and Palliative Nursing, 8(6): 320-327. Carr, F. M. & Mohr, J. G. (2008). 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