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52301853

  1. 1. JOURNAL OF PALLIATIVE MEDICINEVolume 13, Number 7, 2010ª Mary Ann Liebert, Inc.DOI: 10.1089/jpm.2009.0393 Health-Care Professionals’ Perspective on Hope in the Palliative Care Setting Esther Mok, Ph.D., R.N., R.M., Ka-po Lau, M.Phil., Wai-man Lam, MBBS, MRCP, FHKCP, FHKAM,2 1 1 Lai-ngor Chan, M.Sc., R.N., R.M., Jeffrey Ng, MBBS, MRCP, FHKCP,2 2 and Kin-sang Chan, MBBS, MRCP, FRCP, FHKCP, FHKAM2AbstractHope is considered a coping strategy as well as a factor that enhances quality of life for patients with advancedcancer. Most studies on the meaning of hope are from the patients’ perspective. However, the health-careprofessionals’ view is also important since it may affect their practice. This study explored the meaning of hopeto patients with advanced cancer from health-care professionals’ perspective. This was a qualitative study thatused a hermeneutic phenomenological approach. Five focus group interviews were conducted with 23 partic-ipants including physicians, nurses, social workers, occupational therapists, chaplains, and a physiotherapistworking in the palliative care unit of a hospital in Hong Kong. Data analysis revealed four themes: expectedhopelessness, a dynamic process of hope, hope-fostering strategies, and peace as the ultimate hope. It appearsthat health-care professionals’ hopefulness contributes to the hopefulness of patients. Opportunities to reflect ontheir values, beliefs, and experience may help health-care professionals enhance their ability to foster hope inpatients.Introduction particular hope object. The sphere of generalized hope is es- pecially relevant within palliative and end-of-life care whenH ope is fundamental to life. It is just as important to have hope in the hour before death as it is to have hopein the other stages of one’s life.1 Hope has in recent decades the focus of hope of patients with advanced disease gradually shifts from having or doing to being.11 A handful of inter- ventional studies have been undertaken to foster hope inemerged as a therapeutic factor in the health-care literature. patients with advanced disease.12–14 Overall, the impact ofExisting research supports the notion that hope is both a these interventions are promising, increasing patients’ level ofcoping strategy2,3 and an important factor in enhancing hope and quality of life. However, interventions proposed toquality of life4 for patients with cancer, while hopelessness tackle existential concerns including hope are often too timesignificantly and independently predicts suicidal ideation5 consuming and no studies have described interventionsand desire for hastened death6 in patients with advanced that could be easily implemented in everyday health-carecancer. Enhancing or maintaining patients’ quality of life is practice.15the primary goal of palliative care.7 While spirituality was Health-care professionals are able to enhance, maintain,reported to have a positive effect on various quality-of-life or destroy hope in patients through their attitudes, behav-issues in palliative care,8 and hope is one of the dimensions of iors, and ways of communication.16 It is important forspirituality at the end of life,9 hope is a particularly relevant health-care professionals to reflect on their perceptions ofconcept within palliative and end-of-life care. patients’ hope and how those may affect their practice since Hope was defined by Dufault and Martocchio10 as a their views may not correspond to those of the patients.17 So‘‘multidimensional dynamic life force characterised by a far, most findings on hope are from the patients’ perspective.confident yet uncertain expectation of achieving a future good Exceptionally, two studies on hope from oncology nurses’which, to the hoping person, is realistically possible and perspectives found that hope in cancer patients was ex-personally significant.’’ They further divided hope into gen- pressed as the inner energy that drove them to keep on livingeralized and particularized hope, where the latter involves a well until the end of life.17,18 Furthermore, the nurse–patienthope object and the former is a sense of future good without a relationship characterized by nursing actions seemed to be a 1 School of Nursing, The Hong Kong Polytechnic University, Hong Kong. 2 Pulmonary and Palliative Care Unit, Haven of Hope Hospital, Hong Kong. Accepted February 25, 2010. 877
  2. 2. 878 MOK ET AL.very important factor in determining whether the patient An interview guide consisting of broad open-ended ques-was able to feel hopeful.18,19 tions with cues and probes was used to explore the experience Since hope can be preserved well until the very end of life in of hope. The questions were general and not intended to elicitpatients with advanced disease and health-care professionals any preconceived or theoretical notions about hope beyondplay an important role in preserving hope in patients, un- the participants’ actual experience. The interview questionsderstanding hope from health-care professionals’ perspective included: How would you describe hope? Do you rememberwarrants further studies. This article is a report of a study that any particularly hopeful/hopeless patients? Have you everexplored the meaning of hope to advanced cancer patients tried to foster hope in patients?from health-care professionals’ perspective. Data analysisMethods The focus group interviews were transcribed verbatim into This was a qualitative study that used a hermeneutic Chinese. The accuracy of transcription was verified by com-phenomenological approach. According to Husserl,20 paring the text with the tape and rectifying any errors ormeaning is constituted in our everyday experience but is not omissions. A hermeneutic interpreter is in a reflective posi-fully explored since the everydayness is often taken for tion, taking part in the hermeneutic process that entails agranted; truth therefore needs to be uncovered by exploring systematic analysis of the whole text and parts of the text, andthis ‘‘taken for granted.’’ Heidegger21 further proposes that a a comparison of the two interpretations for conflicts and anperson exists as a ‘‘being-in-the-world’’ whose experience is understanding of the whole in relation to its parts.21 Siftinginseparable from his or her historical and traditional con- through the data reveals patterns, themes, and a global pic-texts. Hermeneutic phenomenology focuses on under- ture of the phenomenon.21 KPL read the transcripts severalstanding and interpreting the deep meaning or essence of times to develop an impression of the ‘‘whole’’ and then ex-human experience within context through in-depth explo- tracted ‘‘parts’’ from the transcripts, which included signifi-ration of the transcribed text.22 cant phrases related to the experience of hope. She reflected on the interrelations between the whole and the parts andSetting and recruitment grouped the data into codes, minor themes, and major themes. EM verified the occurrence of themes with the origi- The study was conducted in the palliative care unit of the nal transcripts. WML, LNC, JN, and Kin-sang Chan reflectedHaven of Hope Hospital, Hong Kong from November 2008 to on the fitness of findings in relation to their clinical context.February 2009. The palliative care unit provided in-patient, Identified codes and themes were translated from Chineseout-patient, and home-care services with a case load of ap- into English by two independent translators. The two trans-proximately 160 patients with advanced cancer at one time. lated versions were compared, analyzed, and modified byThe unit followed the U.K. model of palliative care with a the research team. The modified English version was thenmultidisciplinary professional team of 30 physicians, nurses, back translated into Chinese by an independent translator.social workers, occupational therapists, physiotherapists, All the translators were bilingual in Chinese and Englishchaplains, and a clinical psychologist. The hospital has a and were health-care professionals knowledgeable aboutChristian foundation. advanced cancer. The research team compared the Chinese Lai-ngor Chan (LNC) sent an e-mail to 27 of 30 professional back-translated version and the original Chinese version tostaff to explain the study and to invite them to participate. The identify and analyze discrepancies. The modified Englishthree excluded, Wai-man Lam (WML), LNC, and Jeffrey Ng version was accordingly further refined until the English( JN), belonged to our research group. We intended to recruit version was deemed an accurate translation of the originalparticipants with diverse professional backgrounds and with Chinese version.different lengths of experience in palliative care. Therefore,LNC could purposively recruit additional participants in Ethics considerationsperson depending on participant composition after the firstcall for participation through e-mail. Ethical approval was obtained from the University’s Hu- man Subjects Ethics Subcommittee and the Hospital’s EthicsData collection Committee. The participants were informed about the study before it began, their voluntary participation was assured, Esther Mok (EM) or Ka-po Lau (KPL) conducted audio- and their anonymity was guaranteed. Written consent wastaped focus group interviews in Cantonese with WML and/ obtained from all participants.or LNC as observer(s). Since the palliative care unit adopted ateam approach, a group interview allowed participants to Resultsexchange thoughts and experience about patients they com-monly encountered. Furthermore, focus group interviews as a Out of the 27 staff invited, 16 from a good mix of profes-data collection strategy are a rich source of information23 es- sional backgrounds were recruited after the first call for par-pecially owing to the group process and group interaction.24 ticipation through e-mail. However, they had relatively longGroup discussion produces data and insights that would be experience in palliative care. Accordingly, we purposivelyless accessible without the interaction found in a group set- invited a group of nurses with relatively short experience toting.25 Focus group interviews were first developed particu- join. As a whole, 23 participants were recruited and theirlarly for use with Anglo-Celtic populations,26 but they are also characteristics are shown in Table 1. Five focus groups withvaluable for cross-cultural research27 and effective with Chi- two to seven participants were conducted from Novembernese populations.28 2008 to February 2009. Staff with heterogeneous professional
  3. 3. HEALTH-CARE PROFESSIONALS’ PERSPECTIVE ON HOPE 879 Table 1. Characteristics of ParticipantsParticipant Group Sex Age Religion Profession Years of experience 1 1 F 30–39 Nil Occupational therapist 16 2 F 40–49 Christian Nurse 16 3 F 50–59 Christian Physician 20 4 F 40–49 Christian Nurse 16 5 F 40–49 Christian Nurse 16 6 2 F 40–49 Christian Nurse 16 7 F 50–59 Christian Nurse 13 8 M 40–49 Christian Physiotherapist 16 9 F 50–59 Christian Nurse 1510 F 30–39 Christian Social worker 1411 3 M 20–29 Christian Physician 112 F 40–49 Christian Chaplain 2.513 4 M 30–39 Nil Occupational therapist 814 F 30–39 Christian Social worker 315 F 40–49 Christian Chaplain 1016 F 30–39 Christian Social worker 317 5 F 30–39 Nil Nurse 818 M 30–39 Nil Nurse 0.519 F 20–29 Christian Nurse 120 F 30–39 Nil Nurse 221 F 30–39 Nil Nurse 822 F 30–39 Christian Nurse 1023 F 30–39 Christian Nurse 5backgrounds participated in the first four groups, which death, carried on living a normal life, actively achieved goals,included physicians, nurses, social workers, occupational or had a vision of life after death (7–10).therapists, chaplains, and a physiotherapist. The fifth groupwas comprised entirely of nurses. Each focus group lasted Hope-fostering strategies. Our participants experi-for around 45 to 75 minutes. The five staff who did not enced positive change in some patients who were first re-participate included a clinical psychologist, two physio- garded as having a sense of hopelessness after they settled intherapists, an occupational therapist, and a chaplain due to palliative care services, through affirmation of worth, rela-their unavailability for a focus group interview during the tional connectedness, partnership, religious support, andstudy period. resolution of unfulfilled family responsibilities (11–15). They reflected on their experience and found inspiration thatThematic analysis helped them endure: they believed that in patients with ad- vanced cancer, hope was not only possible but also essential Data analysis revealed four themes: expected hopelessness, (16, 17). They served with humility and understanding (18,a dynamic process of hope, hope-fostering strategies, and 19). They had to understand their own hope and remainpeace as the ultimate hope (Table 2). The themes and exem- hopeful in the caring process (20).plars represented an accurate description of the participants’expressions of the meaning of hope in the palliative care set- Peace as the ultimate hope. At the very last stage ofting. life, the participants perceived hope in patients as spiritual. The participants appraised the condition of the patients and Expected hopelessness. Our participants expected to evaluated their work by a sense of peace manifested in pa-encounter patients who felt hopeless as a normal response to tients as a calm, undisturbed, transcendent state of being (21–advanced disease (1) or as a response to disappointment of 23). Peace was considered the ultimate hope in patients.hope during their illness (3). Their expectation of patientsfeeling hopeless was also revealed in a patient’s own words as Discussiondescribed by a participant (2): the patient wondered why thehealth-care staff were so concerned when they saw her accept This study has several limitations. Focus groups are in-death so well and continue to enjoy life, instead of being ab- herently ‘‘social,’’ which tends to elicit data that participantssorbed in sadness. feel more comfortable expressing in the social domain; more sensitive or private data may be unlikely to surface.29 The A dynamic process of hope. Our participants en- sample was predominantly composed of women and nurses.countered patients who they considered having a sense of It reflected the higher proportion of women and nurses in thehopelessness. Such patients showed a desire for hastened palliative care team but might have led to findings that weredeath, lived without a meaning, or were withdrawn (4–6). dependent on gender or reflective of a nursing view. DataHowever, they also witnessed hopefulness. They perceived were collected from a Christian hospital and our participantspatients as hopeful when the patients actively prepared for were primarily Christian. Our findings might thus be biased
  4. 4. Table 2. Thematic Analysis and Exemplars Themes Categories Subcategories Exemplars Quote Expected Despair as a normal ‘‘Patients with advanced cancer do not consider many things to be hopeful. Cancer is very 1 hopelessness response alarming to them and they already begin to despair about life after the diagnosis.’’ ‘‘The patient said, ‘there is something wrong with you (health-care professionals). 2 Everybody (health-care professionals) thinks there is something wrong with me.’ She wondered why we were so concerned about the fact that she was not suffering.’’ Disappointment ‘‘Patients have experienced a lot of disappointment. Many of them are unfortunate and have 3 of hope many bad experiences in the earlier stages of their illness. They become closed and think negatively.’’ A dynamic process Hopelessness Desire for death ‘‘The patients thought it would be best if they could die with an injection.’’ 4 of hope Meaninglessness ‘‘Sometimes patients expressed their meaninglessness with words like ‘do not know what 5 life is for.’ Some of them felt bored. Some of them sighed. It seems that they feel they are dying but not yet dead; that they are living for no reason.’’ Withdrawal ‘‘The patient was ambulant but he always stayed in bed. His participation level was very 6 low. You knew he could speak, but he turned his face away from you.’’ Hopefulness Preparing for death ‘‘The patient had planned her funeral. Her condition was very bad when she entered the 7 palliative ward. Still, she wanted to go home to stay with her family. She told us she was ready. She knew she was dying. She knew she had to say goodbye to everyone.’’ Living a normal life ‘‘The patient thought people have to die anyway and chose to keep on living a happy 8 and enjoyable life. There were still many friends visiting her in the ward. She still kept up a good appearance. She said that she had to eat less each time but ate many times every880 day since the nutrition was absorbed when she could eat.’’ Goal attainment ‘‘All the patient thought about was how to prepare the future for her parents and younger 9 brother albeit with limited strength and energy. That drove her to continue to live without feeling sad and unsettled all the time.’’ A vision of life after ‘‘The patient told me one day before she died that she had a dream in which she saw a very 10 death bright light. I guessed she was talking about heaven. She said it was very bright and warm and Jesus welcomed her.’’ Hope-fostering Hope-fostering Affirmation of worth ‘‘That patient had cord compression and could not walk. He was very sad and felt he had no 11 strategies techniques dignity when he first came. I remember that when I visited him again later, he appreciated the good weather and did not focus on his disability all the time. He said the health-care assistants and nurses treated him very well and he was very secure in the ward. It was the dignified care we provided that counted.’’ Relational connectedness ‘‘The patient was very unhappy when he first came and had suicidal ideation. When his 12 symptoms were under control and a therapeutic relationship was established, he became more cheerful. Each time he came back for medical consultation, it gave him hope. It seems silly but it already gave him hope simply to meet and chat with us. Meeting the doctors and nurses, or entering our hospital also gave him hope.’’ Partnership ‘‘It is like dancing. We are partners. We should not move faster than the patients. We also 13 should not rush them. Sometimes we are pushy, wanting to pull them when we see a tendency to switch in them. Instead you move with them. Sometimes they pause. They may not switch. It is growth and their own growth. If they are not there you should not be there either, you should follow their pace. Sometimes they want to step back. Then you have to step back too. Otherwise you will step on them.’’
  5. 5. Religious support ‘‘When his spiritual condition was not good, all he could remember from his dreams or other 14 scenarios was dark. When he was changed by prayer and other things, he saw the colours of the rainbow in his dreams. He could express the change by himself.’’ Resolving unfulfilled ‘‘The patient was worried that nobody would look after her child after she died. We helped 15 family responsibilities her to review who she could trust. Actually I thought she knew deep down her husband was the one. We facilitated a talk between them. She honestly told her concerns and her husband showed his commitment. The process was sad but gradually her emotion improved and she accepted her situation.’’ Hope-fostering beliefs Hope is always ‘‘Hope is continuous. It’s something that never ends. There is always something you can do. 16 and attitudes possible Nothing is ever hopeless.’’ Hope is always ‘‘Hope is core in the life of dying patients. They have no motivation and no reason to live 17 important without hope. They do not have a future to face and achieve without hope. If they have no motivation, it is hard for them to keep on living. I think hope is important.’’ Humility ‘‘We are not answers to every question. We have no answers. The answers are not in us. They 18 are in the patients. Therefore, we have to ask questions, talk to them, reflect. We are companions on the road. We are also walking on the same road as they are. So rather a companion, without judgment, they are our teachers.’’ Understanding ‘‘Always be considerate. Be more thoughtful about patients’ situation. We really do not know 19 how hard it is to take it when we are not yet at that stage of life, the stage of waiting for death.’’ Remaining hopeful ‘‘In order to give hope to patients, we ourselves as workers have to be always hopeful. We 20 should be clear about what we are doing, what our hope is and what our expectation is; then we can give hope.’’ Peace as the ultimate Peace at the end Calmness ‘‘I visited the patient, prayed for him and encouraged him to believe in God. When he decided 21 concern of life to turn to God, he closed his eyes and looked comfortable. He looked like he was falling881 asleep. He did not talk then. I heard that he had passed away three hours later. At that moment a picture surfaced in my mind, a picture of him looking so peaceful, knowing what death was; it was done and his eyes were closed.’’ Undisturbed state ‘‘Peace may really be the ultimate. If patients have peace, they will not be disturbed. Even 22 of being without quality of life or with many physical symptoms, they still have peace.’’ Transcendence ‘‘The patient continued to be involved in deep spiritual growth. Her emotion improved. She 23 is at peace. She told me she had peace and she did not fear. Towards the end of life, her spirituality was just flying on.’’
  6. 6. 882 MOK ET AL.in this regard. Since it was difficult to gather a group of pro- ticular leads to diminished self-worth and increased sense offessionals for interviews, focus groups were conducted guilt and shame.40without particular restrictions on group size and participants’ Our findings revealed that at the end of life, patients’ hopeprofessional background. This study focused on the per- became spiritual as a sense of peace. Oncology nurses fromspective of health-care professionals that did not represent the the West also regard peace as one of the attributes of hope forviews of patients and their family. patients with cancer.17 Spiritual well-being is a frequent In our study, health-care professionals expected to meet theme emerging in studies of hope in patients with advancedpatients with advanced cancer who felt hopeless. However, disease. A review on psycho-spiritual well-being in patientsreflecting on their experience, they affirmed that hope was with advanced cancer concluded that health-care profes-possible for and important to the patients. They realized that sionals can play an important role in enhancing patients’they should remain hopeful to perceive and foster hope in psycho-spiritual well-being, but further research is needed topatients. This reflection was echoed by an exemplar quoted understand specific interventions that effectively contributein a study on the hope of professional caregivers caring for to positive outcomes.41 In our study, it appears that peacedying people: ‘‘My own hope allows me to see patients’ lives manifests itself as a calm, undisturbed, transcendent state ofbeyond their illness. It helps me to see small miracles that being. Further investigations into the nature of peace and themay have otherwise gone unseen.’’30 Here, we come up pathway towards this potentially ultimate hope of life wouldwith one critical quality of palliative care professionals— enhance health-care professionals’ competency in helpingthey are hopeful people. Hope is identified by health-care patients live in peace.professionals as a necessary component of healing,31–33 Our findings give evidence to the positive impact ofwhich is a central task in palliative care. Palliative care palliative care on patients’ hopefulness. It is not clearprofessionals affirmed that their own hope helped them whether palliative care as a whole or only some of itsfoster positive relationships, communicate, provide comfort, components contribute to patients’ hopefulness. However,and offer hope to patients and their families.30 Hope was also it is believed that the personal qualities of health-careregarded by nurses as a contributing factor for job satisfac- professionals, in particular their own hopefulness, count.tion.34 Hopefulness may not be a quality that is inherent or Health-care professionals should be encouraged to ac-stable. It will be interesting to examine the factors or ways by tively reflect on personal values, beliefs, and experiencewhich health-care professionals remain or refresh their that may affect their own hopefulness towards their workhopefulness. and perception of patients’ hopefulness, for the benefit of On reflection, our participants acknowledged the impor- their own well-being as well as patients’. This study fo-tance of serving with humility and understanding. They cused on the perspective of health-care professionals. Pa-learned from the patients and were considerate of the pa- tients’ perception of their health-care professionals’tients’ situation. Professionals may be more authoritative in a hopefulness and how that influences their own sense oftraditional top-down approach to medical care. In palliative hope are unknown. These questions shall be addressed incare, a bottom-up approach is particularly relevant when future studies.health-care professionals can not possibly have a way of ac-tually experiencing what is going on in body, mind, and spirit Acknowledgmentsof patients with advanced cancer. While traditional, formal We thank all the participants who donated their preciouseducation did not prepare, for example, physicians for the resting time during lunch or after work to openly share withtask of caring for someone at the end of life; they learned us their invaluable experience and points of view. The re-about the care of dying people, in an emotional and intimate search was funded by a Block Grant (G-U464) from the Hongway, from those dying people.35 In the interactive process of Kong Polytechnic University.caring, apart from giving and learning to serve, it is believedthat health-care professionals are also receiving and learning a Author Disclosure Statementlesson of life and death.36 Our participants had fostered hope in patients in their ev- No competing financial interests exist.eryday practice by affirmation of worth, relational connect-edness, partnership with patients, religious support, and Referencesresolution of unfulfilled family responsibilities. Affirmation of 1. Hall BA: The struggle of the diagnosed terminally ill personworth, relational connectedness, partnership with patients to maintain hope. Nurs Sci Q 1990;3:177–184.and religious support are factors that can also be found in 2. 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