Family Centered Care of Terminally Ill Patients - Essay Example

You're 29 November 2006 Family Centered Care Case Study Introduction Anytime a member of the family becomes seriously ill andthey are placed in a medical environment such as ICU, the stress on the immediate family becomes very heavy and they themselves are in a delicate state that is almost like that of the patient but only in a different way. Circumstances that can further complicate the psychological wellbeing of the family could be situated around the member of the family who was admitted to ICU suddenly dying. In cases such as these the nurses who are in charge of the care of the patient need to have consideration for the family's needs as well. This ideology draws on theoretical backgrounds in the humanistic approach in nursing as well as the interpersonal approach also. The current scenario in this literature follows a case study where a family member has died in ICU quite suddenly and despite the high quality of care the nurses who were in charge of the patient have given there was no reliable way to tell the patient was not going to make it. Thus the proponent of care and concern falls on paying considerable attention to the family's needs following this unforeseen event. Caring for Terminally Ill Patients and Consideration of the Family There is agreement that patients with life-threatening illnesses, including progressive malignancies, need appropriate therapy and treatment throughout the course of illness. At one stage, therapy is directed toward assessment and intervention in order to control and/or to cure such illness and alleviate associated symptoms. For some persons, however the time comes when cure and remission are beyond current medical expertise. It is then that the intervention must shift to what is now often termed 'palliative treatment,' which is designed to control pain in the broadest sense and provide personal support for patients and family during the terminal phase of illness. In general, palliative care requires limited use of apparatus and technology, extensive personal care, and an ordering of the physical and social environment to be therapeutic in itself. There are, as it were, two complementary systems of treatment which may often overlap: One system is concerned with eliminating a curable disease and the other with relieving the symptoms resulting from the relentless progress of an incurable illness. There must be openness, interchange, and overlap between the two systems so that the patient receives continuous appropriate care. The patient should not be subjected to aggressive treatment that offers no hope of being effective in curing or controlling the disease and may only cause further distress. Obviously, the clinician must be on the alert for any shifts that may occur in the course of a terminal illness, which make the patient again a candidate for active treatment. Patients suffer not only from inappropriate active care, but also from inept terminal care. This is well documented by studies that only confirm what dying patients and their families know at first hand. These principles have been prepared as an aid to those who have initiated or are planning programs for the terminally ill in delineating standards of care. General Assumptions and Principles in the Care and Commitment to the Terminally Ill Patient and the Family The care of the dying is a process involving needs of the patient, family, and caregivers. The interaction of these three groups of individuals must constantly be assessed with the aim being the best possible care of the patient. This cannot be accomplished, however, if the needs of the family and/or caregiver are negated (Dickenson & Johnson 1993, pg. 76). The problems of the patient-family facing terminal illness include a wide variety of issues: psychological, legal, social, spiritual, economic, and interpersonal. Care requires collaboration of many disciplines working as an integrated clinical team, meeting for frequent discussions, and with commonness of purpose. Dying tends to produce a feeling of isolation. Nevertheless, all that counteracts unwanted isolation should be encouraged; social events and shared work, inclusive of all involved, should be arranged so that meaningful relations can be sustained and developed (Gross 1992, pg. 112). It has been the tradition to train caregivers not to become emotionally involved, but in terminal illness the patient and family need to experience the personal concern of those taking care of them. Profound involvement without loss of objectivity should be allowed and fostered, realizing this may present certain risks to the caregiver. However, health care services in terminal cases or where the patient is suddenly admitted to ICU customarily lack coordination. To counteract this, the organization structure must provide links with existing health care professionals in the community. A supportive physical environment contributes to the sense of well being of patients, of family, and of caregivers. The environment should provide adequate space, furnishings that put people at ease, the reassuring presence of personal belongings, and symbols of life cycles. Although this might be difficult to establish in an ICU environment discussion with health professionals and exceptions being taken into consideration often change the scenario from one of a cold sterile environment, to one of a more personal atmosphere. The Nurse as a Therapeutic Instrument in giving Emotional Support to the Family of the ICU patient Advocacy is something that every nurse should ensure is a part of the patient and family treatment routine. The code for nursing identifies the responsibility for advocacy, and yet their employers in this role often do not support nurses (Hinchcliff et al 1993, pg. 83). In the day-to-day care of acutely ill patients, healthcare providers grapple with the appropriate use and boundaries of life-sustaining technology. Applying ethics frameworks can assist nurses to articulate their concerns about the inappropriate use of life-sustaining treatments in acute care settings. Principle-based ethics, perhaps the most widely recognized and utilized ethical framework uses the four major principles in case analysis. These principles, the first three of which are most relevant to these cases, include autonomy, beneficence, non-malfeasance, and justice. Autonomy is the principle that has become increasingly prominent in the healthcare system (Alexander et al 1994, pg. 77). The principle of respect for autonomy as applied to end-of-life decision making requires that persons should be informed about options for end-of-life treatment, and be able to make their own decisions. In the past, physicians by and large decided what treatments were appropriate for patients. Doing good is the essence of the principle of beneficence. The patient's voice is more widely welcomed, heard, and supported through laws to support patient autonomy. Somehow, a middle road needs to be identified, because patients and their relatives have to be sufficiently informed about the benefits and burdens of life-sustaining treatment to make autonomous choices (Dickenson & Johnson 1993, pg. 45). Presenting life-sustaining treatments, in the absence of a clear explanation of the intended benefits, can be harmful rather than helpful to the patient, as well as the immediate family. The principle of non-malfeasance requires that healthcare providers first should do no harm to patients. When patients are not encouraged and supported to participate in advance care planning and end-of-life decision making, resuscitation often occurs by default, with less than optimal patient outcome. Families need reassurance. They need to feel the staff care's about them (Alexander et al 1994, pg. 34). In most wards family visitation times are usually restricted to those of immediate family members and have very restricted hours. The locked, double doors say "keep out" to family members, especially those who were left to sit outside until the appropriate time. The doors become a symbol of what families resent, and they can direct this resentment toward the nurses. Even good care can't undo the dissatisfaction that results from restrictive visitation policies. However, despite what adversities or negativities exist in the area of ICU care, Social support has been shown to be widely beneficial in moderating the effects of both chronic and acute stress. Attention should be paid to the whole family during the grief process, which starts when the family is informed of a family member's terminal illness. After the death of a family member the family should be given time and met humanely. The nurse should keep in contact with the family, e.g. by telephone, thus showing their willingness to support the family until the end of the care relationship. The Psychological Areas of the Family the Nurse should Address The ICU environment has been mentioned as being rather frightening or intimidating to family members. Oh (1997) points out that, "The ICU environment of equipment, alarms, (other) patients, and constant activity can be hostile and frightening." Furthermore, a myriad of literature focused on the needs of the family with a patient in ICU who is terminally ill or that that has already passed away suddenly, there needs to be definite consideration towards remembering that the communication between the family and the health professionals is appropriate. Care should be taken to establish what is already known about the events preceding the death, and that any incorrect details are clarified (Gross 1992, pg. 134). The use of touch is also justified if acceptable to the relative's personal, cultural or religious beliefs. The family should be encouraged to express their feelings of their deceased relative openly. Furthermore, regardless of the length of stay a patient has been in intensive care, a sudden and unexpected death almost always results in shock and disbelief when the family and friends are informed. This in itself can be manifested in a variety of ways. Some people are openly expressive of their despair, and will openly weep with support from their relatives, whereby others become withdrawn and appear somewhat cold toward the event. However, as previously mentioned, a sudden death is more likely to result in an abnormal or prolonged grieving reaction. Parkes (1975) identified that in cases of sudden death, especially where younger people were involved, that "there was clearly a more emotionally disturbed response." This can frequently be expressed as an overtly angry response sometimes aimed at the heath professionals who have been caring for the deceased, or toward other members of their families (Dickenson & Johnson 1993, pg. 47). It is important that if such feelings are expressed by the bereaved, those health care professionals are understanding and do not take personal affront to their remarks. Any remarks made at such a time can frequently escalate the situation, whereby discretion may be the best course of action (Dickenson & Johnson 1993, pg. 47). Following the death of their loved one, one of the final nursing responsibilities to the patient is to perform the last offices. Alexander et al. (1996) have highlighted the importance of this and have stated that: The last sight of the patient will remain in the memory of relatives for a very long time. Nurses have a responsibility to make sure that the appearance of the body does not disturb relatives or friends upon viewing. The preparation of the body for viewing is therefore arguably a very important nursing responsibility. Intensive care units are intimidating and patients frequently are intubated and ventilated, and usually have a variety of infusion and fluids being administered intravenously. This frequently results in generalized edema, especially if high aspiratory pressures are used, and if large doses of Isotopes are being given, patients frequently take on a mottled and somewhat unnatural appearance. This is usually distressing enough to relatives and friends, but after death can give the impression of suffering and exacerbate relatives' distress (Kubler-Ross 1981, pg. 27). With the removal of these foreign objects, and careful preparation, tending to the personal hygiene of the recently deceased, a more peaceful image can be created for the relatives. This may serve not only to orientate the family to the reality of the situation, but also to create a lasting image, which is more acceptable than an incubated patient. The removal of such items also removes a physical barrier to touching the deceased, which is frequently a problem with intensive care units. Wright (1991) actively encourages the viewing of the deceased and goes on to state that: "It affirmed for me that the time and effort spent with relatives and the deceased are tremendously valuable in providing some comfort at a most difficult period (Wright 1991, pg. 87). The family should be left alone with the deceased if this is their wish, but also to be assured that someone is available should they feel they need company in this very personal and emotive time. This time allows them to say their final farewells to the deceased, and also allows a healthy expression of their emotions without the feeling of being watched by others. The family quite often form a lasting attachment to the health professionals involved in the first and final stages of the deceased's care, and the use of a named nurse who has had some contact with the family during the patients care can facilitate the giving of essential information, a point supported by Alexander et al (1996). Usually in the clinical area, after the family has had time with the deceased, it is common practice to give them the essential information for the duties they have to perform such as inform the registrar of the death, etc. Usually, and in a sensitive manner, they are required to arrange the collection of the death certificate, and are instructed to make the necessary funeral arrangements, in accordance with their religious and cultural belief system. However, given the emotional disturbance they are likely to be experiencing, most clinical areas have produced bereavement handbooks, which contain most of the information highlighted. This will allow the family to clarify any details which they may have misinterpreted or forgotten. These booklets also contain some basic guidance to family as to available support services such as cruise and other bereavement counseling services, and this is highlighted at the by the nurses involved in the final staged of the deceased's care. Conclusion This assignment has briefly illustrated some of the actions taken immediately following the death of an individual in an intensive care unit. What is evident from the content of the assignment is the relatively insubstantial contact experienced with the family following the death of their relative/loved one in an intensive care unit, whether the death is sudden or not. Long-term follow up with the relatives is available but is generally seldom used. The clinical area in question has initiated some measures to facilitate the grieving process of relatives and to allow their grief to manifest itself in a normal manner. Essential to this is to provide effective communication when dealing with the family and to have a genuine empathetic approach when giving the news of the death of their loved one. This is a view supported by Wright (1991) who found that: "Families value honest direct information about the sequence of events and from people who did not skirt around the real issues (Wright 1991, pg. 46). The family should be encouraged to openly express their feeling and should be actively encouraged to view the body after final preparations have been made. Essential information only should be given, as not to overload them with unnecessary information at what is obviously a distressing time. These basic measures should assist the family on a pathway to normal grieving and hopefully avoid any long-term complications, although this is generally difficult to evaluate (Robbins 1989, pg. 17). These measures are generally adapted from standard procedures carried out throughout any clinical areas, but the addition of the bereavement audit has allowed an informal assessment of the effectiveness of these measures. One such method is the use of replies received to the bereavement cards sent out, which have generally yielded positive results, and would imply that the family of the deceased values the service, and that it has helped the grieving process (Wordon & William 1982, pg. 77). Given that the death of an individual can have such a profound effect on the lives of their relatives, it is unfortunate that some clinical areas have not yet implemented even rudimentary protocols to facilitate the care of the bereaved. As a recommendation for practice, it would be appropriate for more clinical areas to adopt such protocols, and also to permit easier access to professional bereavement counselors and support groups. This is a view endorsed by both Oh (1997) and Hinchliff et al (1993). Works Cited Alexander, M & Fawcett, N & Runciman, P. Nursing Practice: Hospital and Home - The Adult. London: Churchill & Livingston Publishing, 1994. Dickenson, D & Johnson, M. Death, Dying, and Bereavement. London: Sage Publications, 1993. Gross, R. D. Psychology: the Science of the Mind and Behavior 2nd Edition. London: Hodder & Stoughton, 1992. Hinchcliff, S & Norman, S & Schober, J. Nursing Practice & Health Care 2nd Edition. London: Hodder & Stoughton, 1993. Kubler-Ross, E. Living with Death and Dying. London: Souvenir Press, 1981. Oh, T. E. Intensive Care Manual 4th Edition. Oxford: Butterworth & Heinmann Publishing, 1997. Parkes, C. M. Bereavement Studies of Grief in Adult Life. London: Penguin Books, 1986. Robbins, J. Caring for the Dying Patient and Family. London: Chapman & Hall Publishing, 1989. Wordon, J & William, T. Grief Counseling and Grief Therapy. London: Spring Publishing, 1982. Wright, B. Sudden Death. London: Churchill & Livingston Publishing, 1991. Read More