Palliative Care Nursing in Hong Kong - Essay Example

Running Head: The Interrelationship of The Interrelationship of a Changing Society, and the Values, Attitudes, and Concerns of People Dying inHong Kong Community and those Caring for them In APA Style According to the Census and Statistics Department in Hong Kong, 30,406 out of the 100,000 sample population died in 2008. The leading cause of death was due to malignant neoplasm which accounted for 12,390; followed by heart diseases (6,737), pneumonia (5,399), cerebrovascular diseases (3,751), and chronic lower respiratory disease (2,129). There are approximately 23,750 cancer patients who registered in the Hong Kong Cancer Registry Hospital Authority in 2006. Cancer is one of the diseases that palliative care establishments cater to. It is known to be a deadly disease and can significantly change a person's, as well as their families, life. In its advanced stages, most patients need extensive care which includes palliative care in permanent or out-patient hospice nursing ("Cancer: Prognosis", n.d.). The Coordinating Committee (Hospice) of Hospital Authority (HA) Hong Kong SAR Government defines hospice or palliative care as "the care of the patients and their families with active progressive advanced disease and a limited prognosis for whom the focus of care is the quality of life" (Liu, 2005, p.183). Palliative care started in Hong Kong in 1982. At the beginning, it was a "consultative team" in a general hospital. In 1986, a second palliative care team was established who worked primarily with those who had incurable lung malignancy. Diagnosis of the disease was not necessary in order to get a referral. The team gave pain and symptom management as well as practical, emotional and spiritual support to the patient and their family. Due to lack of public knowledge, patients had unrealistic expectations thinking that palliative care can cure the disease and prolong ones life. It was not until 1985 when a demarcation between cure and palliative care was made with the help of the Society for the Promotion of Hospice Care. Their goals were aimed at public education, fund raising, and the establishment of an independent hospice in Hong Kong which will serve as a discernible symbol for the public (Sham, 2003, p.65). It was through their efforts that the Hong Kong community came to know and understand the scope of palliative care. In an article by Hon Joseph Lee in his interview with Dr. York Chow on hospice care services, it was written: At present, there are 10 palliative care centers and six oncology centers [in Hong Kong] under HA [Hospital Authority] to provide palliative/hospice care, which includes in-patient service, out-patient service, hospice/palliative day care service, home care service and bereavement counseling (December, 2008). Patients who admit themselves in hospice are almost always dying. Different cultures have different perceptions of death. In Hong Kong, "death is seen as a curse" (Chow and C. Chan, 2005, p.2). It is believed that the very thought of death will bring bad luck and the very mention of death will invite evil spirits in or speed up the process. The Chinese concept of death is deep-rooted and is influenced by the Folk and Taoist beliefs that "the dead have to be judged in hell and punished according to the sins that they have committed in life" (C. Chan, 1999, p.213). Chan (1999) cited examples that illustrate the Folk and Taoist teachings on children: Children are told if they steal when alive, when they die their hands will be cut off as a punishment. If people do not treat their family well, they will be eaten by hungry dogs. If someone kills, he or she will be burnt in eternal fire (p.213). Because of this grotesque and mind boggling picture, they do not talk about death nor do they prepare for it. This leaves them ill-equipped and often times carrying heavy emotional baggage to their grave. Chinese people in Hong Kong have a traditional attitude that contributes to the disinclination to intervene when a person is dying. It is believed that "heaven decides a person's quality of life before and after death; therefore, people should not interfere" (Chan, 1999, p.214). The magnitude of a patient's suffering is proportional to how well they did in their life. If they did steal or kill while alive, the gravity of their suffering would be immense. Families then will not interfere nor help the patient in alleviating the pain because of the belief that the pain or the distress felt was commensurate to how the patient lived their life. However, if the patient lived a life free of transgressions then death will be peaceful and pain-free. Some patients admit themselves in hospice because of debilitation or inability to perform self-care. The loss of ability or strength to perform activities of daily living and self-control is anxiety provoking and poses a problem for the sick person as well as the family. "The strong work ethic, importance of contributing to family well-being and a utilitarian culture render sick people 'useless', and there is a subtle expectation that they should be thoughtful and die" (Chan, 1999, p. 214). Confucian thought emphasizes on a persons' duty to the family rather than having the right to be cared by them, even though filial piety is expected. Thus, it is not surprising that dying Chinese patients view themselves as a burden to their family and often times find very little or no meaning, at all, of their existence (Sham et al., 2005, p.142). Hospice or palliative care does not only cater to the dying patient but to the patient's family as well. Bereavement counseling, or having a "good separation", has become one of the services offered in hospice or palliative care units. This program was conceptualized due to the fact that the Chinese find it difficult to talk about death. The concept of bereavement was no where to be found in the Chinese vocabulary. The counseling started a little after the establishment of the Society for the Promotion of Hospice care. It was not until 1996, that public education and promotion of the term that equated to bereavement was understood by most people in Hong Kong (Chow et al., 1999, 234). Bereavement counseling encourages the patient and their family to express their doubts, anxieties and fears, as well as other emotions that go hand in hand with having a dying family member. This relieves the bereaved and the patient of the emotional baggage that, back then, was so hard for them to face and come to terms with. "Care-giving is the act of providing unpaid assistance and support to family members and acquaintances who have physical, psychological, or developmental needs. Caring for others generally takes on three forms: instrumental, emotional, and informational caring. Instrumental help includes activities such as shopping for someone who is disabled or cleaning for an elderly patient. Care-giving also involves a great deal of emotional support, which may include listening, counseling and companionship. Finally, part of caring for others may be informational in nature, such as learning how to alter the living environment for someone in the first stages of dementia. Caregivers are typically family members, friends, and neighbors. Sometimes care-giving is affiliated with religious institutions. Care-giving is also done by paid workers such as nurses, social workers and counselors" (Drentea, 2007). In addition to the three forms of care-giving, Liu identified financial demands as one of them. Unpaid caregivers, like family members and friends, are often obliged to spend for the supplies needed in caring for the patient. It was written that "economic hardship is induced by the added financial strain of buying medical necessities and aids. A study by Mok et al. reported that forty percent of [family or friend] care-givers lost income and worried about their future financial situation" (Liu, 2005, p.186). In a study by Mok et al., it was demonstrated that cultural beliefs have a great influence on caregivers taking care of terminal patients at home. In the Confucian thought, it was stated that "the role of the self is not to express and manifest itself but to develop the internal moral self. It has always been expressed as conquering selfishness to restore ritual propriety. The cultural concept of yi (rightness and responsibility) - a major component of Confucianism to sustain bonding between people, family and country, and filial duty - is salient". Although family caregivers may sometimes feel exhausted and sad, they do not perceive care-giving as a burden. On the contrary, they believe that their care-giving is important, and is motivated to move pass the immediate circumstance and embrace the meaning of their efforts to their patients as well as to themselves. Family caregivers often do not seek assistance and support from neighbors and friends. This may be influenced by the Chinese perception of "different relationships". They usually do not want to impose on non-immediate relatives and cause distress because there is an expectation of moderate reciprocity and a conditional sense of independence. In addition to the burden of caring for the patient, family caregivers suffer partly due to the diminishing kinship ties and inadequate support from the nuclear family (Liu, 2005, p.186). The immediate family caring for the dying patient often misses out on nuclear family gatherings and socializing with friends' circles due to their care-giving responsibility. It is almost impossible for them to leave the side of their patient without another person relieving them of their duty. In an article by Kwok on sons acting as major caregivers on elderly parents, he wrote: Unlike most western reports, Hong Kong adult sons reveal an active participation in the actual behavior of care of their elderly parents, especially in financial and emotional support - not much less than their female sibling counterparts. The results show consistent findings between values towards elderly care and actual care behaviors received from the parents' side, in which the sons are expected and are acting as the major caregiver, much more so than the daughters. However, inconsistent results are found regarding the major responsibility towards various family members between the two generations. Adult children tend to take their own children (or the third generation) as the top priority of their family responsibilities, while elderly parents come in second and their own spouse comes third. The pattern of elderly support in Hong Kong is argued to be a product of patriarchal norms within a changing gendered societal context. The author contends that the pattern can be explained by the interaction of blood relations with a gendered division of labor (2006). According to Chan, "Buddhist teaching emphasizes the importance of a state of selfless, unconditional benevolence and putting other people's welfare before one's own. A selfless devotion to serve is the key to heaven (the individual can become Buddha and has no need to reincarnate anymore). Being able to help other people is one of the most important achievements in life. In the Buddhist concept, only those who are rich in spirit will be able to forgive" (1999, p.222). The paid caregivers', as well as the family caregivers', desire to help is genuine and not induced by selfish reasons. This desire is what drives them to see pass the sleepless nights and many diaper changes, to the rewarding feeling of helping others. Care-giving is therefore deemed as an honorable profession; a profession that devotes itself to giving dying and debilitated patients the best quality of life that one can offer to another. These beliefs not only help caregivers appreciate and understand the art of care-giving, but also offers the care-giver a sense of accomplishment and fulfillment knowing that what they did changed and made the patients' life worth while. In an exploratory study by Loke et al., out of 21 primary caregivers of patients with terminal cancer from a hospice home service, all but one perceived difficulties in rendering care. This accounted for 95.2% of the sample population. The participants reported experiencing four major kinds of difficulties: relationship with the recipient of care which accounted for 52.4% (11 out of 21); emotional reactions to caring which accounted for 42.9% (9 out of 21); physical demands which accounted for 47.6% (10 out of 21); and restricted social life which accounted for 52.4% (11 out of 21) of the total number of participants. Of the 21 caregivers, 20 (95.2%) felt that the support received from home care nurses was useful. 16 out of the 21 (76.2%) participants believe that skills training is especially useful for the care recipients; and 20 out of 21 (95.2%) believes that informational and emotional support is very helpful for the patients. Informal caregivers also reported that home care nurses provide more useful support overall than family and friends (2003). The Royal College of Physicians as well as the World Health Organization stated that the goal of palliative care is to provide the patient and their family the best quality of life. Palliative medicine specialists strive to provide holistic care to achieve this goal. Upon entering the hospice, patient expectations as well as patient sufferings are assessed and determined. Some patients expect cure and prolongation of life, while others expect symptom control and pain relief. In one study, patients' main concerns included pain, shortness of breath, abdominal distention, nausea and vomiting, constipation, weakness or paralysis, poor appetite, difficulty swallowing, swollen limbs and cough. Some also reported psychosocial problems as their main concern (Sham et al, 2005, p.142). Although more than half reported pain as their main concern, in actuality, the incidence of pain is much higher. About 90% of patients referred to a palliative care team had pain that required treatment, however, other units reported lower occurrence of pain ranging from 44-46%. Shortness of breath is another symptom experienced by terminally ill patients. Seventy percent of the patients experienced shortness of breath at rest, while talking and while eating. This symptom caused dependence among patients and was linked with their fear of death. Apart from pain relief, eating is an important facet in providing the best quality of life. Like most cultures, the Chinese enjoy food. Preparing and offering food is often their way of expressing care and concern towards the patient (Sham et al, 2005, p.142). Patient reports on psychosocial problems include fear of suffering, loss of independence, fear of death, thoughts of suicide, loneliness, loss of social role, concern about appearance or odor, loss of dignity, feeling of worthlessness and insecurity. Most of the psychosocial problems reported by patients where mostly family oriented. This is because of the existing strong family ties in the Chinese community. Problems included guilt at being a burden to the family, worries about the future of the family, sadness about separation, feeling of abandonment, communication and relationship problems with the family (Sham et al., 2005, p.142). Palliative care workers cannot control patient suffering; they can only alleviate the symptoms. In a patient satisfaction survey, palliative care was rated satisfactory or very satisfactory by 100% of the patients and 95% of the relatives. It was found to be helpful to 99% of the patients, and 93% of the relatives. With appropriate assessment and management, 30% of the incidence of shortness of breath at rest was controlled. Appetite got better with treatment in 56% of the patients. Pain was also alleviated and controlled in 93% of the patients in a week; 76% of the patients reported sleeping well during their first night in the hospice (Sham et al., 2005, p.143). Palliative care is an emerging trend in Hong Kong health care. It is a trend that the Chinese are now beginning to accept and to take part of. Beliefs and practices are being integrated into the practice in order to make it more appealing to the public at large. New researches, innovation as well as practices are being incorporated in order to improve the rendering of the best quality of life for terminal patients. 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