Full paper Human dignity in patients with terminal illness

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Chochinov 4 interviewed terminally ill patients with cancer in Canada, to explore thepatient’s sense of dignity. Dignity involved respect for autonomy and control, withthe patients’ requests and decisions taken seriously. Maintaining independence wasalso important, so that patients did not feel like a burden to others. Dignity alsoinvolved a sense of pride, through their accomplishments or the accomplishments oftheir children. Some people considered life with severe symptom distress as lifewithout dignity, which was no longer worth living. Dignity might also mean dyingin peace, not suffering too much. Spiritual support also enhanced dignity, such asprayers or religious activities. Dignity was preserved when there was something tolook forward to, like a family member’s wedding; and something worth living for,which might just be simple things. A patient commented that seeing flowersgrowing outside the window, or children playing in the street already made lifeworth-living. To preserve dignity, it was important to respect privacy boundaries inproviding care. The staff attitude was thus of utmost importance.Chochinov 5 also studied terminally ill cancer patients who indicated a loss of dignity.He found that these patients were more likely to report psychological and symptomdistress, with intense dependency needs and loss of the will to live.Dignity-conserving careHence, from the literature, it is clear that to preserve dignity in the terminally illpatients, we have to provide holistic care, focusing on symptom management,psychosocial care, and rehabilitation. Spiritual support is essential. We have toshow respect to patients, noting how patients like to be called, and respecting theirprivacy. We should try to maintain their routines, so as to enhance their sense ofcontrol. We should respect their autonomy, and maintain their sense of pride. It isalso important to take care of the patient’s family and significant others.Szeto 6 studied our patients receiving palliative home care and found that the mostcommon symptoms were pain, loss of appetite, fatigue, constipation and lower limbweakness. Clinical guidelines have been drafted for every day use in our unit, sothat doctors could manage the symptoms properly. Maintaining independence is animportant element of dignity. Patients’ physical mobility not surprisingly decreasedtowards death, despite our rehabilitation program. They might, however, havedeteriorated even more rapidly without rehabilitation. 7Szeto 6 also studied the psychological issues of our patients, with a scale of 0 to 10, ‘0’2
epresenting the least and ‘10’ the most desirable situation. She found that patientscommonly felt depressed, nervous, worried or sad. Some of them felt that every dayseemed like a burden. However, they were not very fearful of the future, and didfeel respected to a certain extent. Wong 7 also studied the psycho-spiritual issues ofpatients in our palliative home care program. She found that patients commonly hadstress, fear, anger, grief, anxiety, spiritual distress and guilt. What is more importantis that these psycho-spiritual problems improved with our intervention.The patients’ concerns about their family have been investigated, which includedfeeling like a burden to the family, worries about the future of the family, sadnessabout separation, feeling abandoned by the family, communication and relationshipproblems with the family. 8 Wong 7 also studied social issues including social contact,role change, mobilization of community resources, caretaking and interpersonalrelationships.All problems improved with intervention, while role change,mobilization of community resources and caretaking achieved statistical significance.Szeto 6 also studied existential issues of our patients, again with a scale of 0 to 10, ‘0’representing the least and ‘10’ the most desirable situation. She found that thepatients’ lives were fairly purposeful and meaningful, fulfilling and worthwhile, andthey felt fairly good about themselves as a person. While a lot of our patients haveno religion, some have traditional beliefs, worshipping heroes in the past and localgods. A significant proportion of our patients are Christians, either Protestants orCatholics. Some are Buddhists. Others have other religions. 8 In our unit,spiritual care is provided by pastoral care workers from the Catholic Diocese,chaplains from the Protestant church, volunteers from the Buddhist community, andthe whole palliative care team, including personal care workers. Palliative care unitsin Hong Kong often have a quiet room where patients, family members and staff cansettle their emotions, do some personal reflections, or conduct religious activities,such as thanksgiving parties for patients to express gratitude to God.As mentioned before, we should respect our patients, addressing them in the way theyprefer, and respecting their privacy.On admission, we would note how the patientpreferred to be called. It is not easy to respect privacy in a general ward, though. Ithas been reported in the United Kingdom that 92% of patients’ families overheardfrom hospital staff conversations relating to personal information about otherpatients! 9 Hence, if possible, sensitive conversations should be conducted in theinterview room.3
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