Cases:Mr Cheung

Mr. Cheung, a 68-year-old gentleman, was diagnosed of advanced pancreatic cancer. He preferred palliative care and symptom control. He used to be a successful small shop owner and enjoyed the life with his beloved family. He was a non-smoker, social drinker with good health before the diagnosis. He lived with his wife. His adult children and grandchildren visited him frequently. Mr. and Mrs. Cheung had good relationship all along. Mrs. Cheung was taking good care of her husband in all aspects and followed his decisions in most of the major family issues.

Few months later, Mr. Cheung’s conditions further deteriorated and became home bound. His medical follow-up was shifted from the out-patient clinic to a home-visit approach. The palliative home care nurse offered a home visit to Mr. Cheung. On arrival, Mr. Cheung was sitting on the sofa with both lower limbs elevated by a comfortable stool. Both his wife and daughter were performing gentle massage to him. He had cachectic appearance and decreased duration of concentration during the conversation.

During the home visit, the home care nurse had an updated assessment of his physical and psycho-spiritual conditions. Mr. Cheung and his family members were coping well at home with the support of the palliative care team. Mr. Cheung had a clear mind and was mentally alert. Pain and other symptoms were well under control except for insomnia and an occasional sense of nausea.

• Mr. Cheung asked “When should I go to the hospital? Can I have a try of my favorite dish, braised pork with preserved vegetable (梅菜扣肉), before the admission?”
• Mrs. Cheung replied “You do not need to go back to the hospital for follow-up. That’s why the home care nurse comes to visit you. Braised pork is unhealthy, so don’t try it anymore.”
• The daughter further explained “Most of the major examinations have already been done. Are you thinking of any specific treatments, or do you wish to see the doctor?”
• Mr. Cheung replied “Nothing special. Just want to know when I need to return to the hospital.”
• The home care nurse further clarified with Mr. Cheung “Can you tell me the reasons why you are repeated asking about hospital admission?”
• Mr. Cheung said “I am no longer able to walk and wet my trousers more frequently. I think it’s time for me to be admitted.”
• The home care nurse answered “Hospital admission cannot change these conditions. Is there anything more important in your mind?” and paused a while, allowing Mr. Cheung to react.
• Mr. Cheung expressed “Am I going to die? People should be admitted to the hospital in their last days of life.”
• The home care nurse acknowledged Mr. Cheung “Your perception is very reasonable. What about your own thoughts? Would you prefer to stay at home or go to the hospital when you are very weak physically?”
• Mr. Cheung said “Indeed I would like to stay at home with my beloved family members. On the other hand, I don’t want to burden them anymore. I believe that everybody must go to the hospital when they are no longer able to take care of themselves.”
• The home care nurse replied “There are no fixed rules regarding whether you should or should not go to the hospital. It depends on your preferences and the practical situations. We will try to work it out with the whole team, including your doctor-in-charge and family members, to see how to keep you stay at home with high quality of life, if this is what you want. Of course, we will also discuss other possible ways of handling your situations with your wife and daughter as a contingency plan.”
• Mr. Cheung became tearful and expressed “Is it possible? I don’t mean I truly wish to be admitted. Just my worries. If I can stay at home until my last breath, it will be much better.”
• The daughter echoed with Mr. Cheung’s wish “You will never be our burden. Instead, you are our spiritual pillar. We will try our best to look after and stay with you for as much as we can. Just like how you took care of us when we were toddlers.”
• Mrs. Cheung said “Yes, you should know that all of us care so much about you. You took care of us in the past and are still our emotional support now. I can cook healthy and delicious dishes for you anytime.”
• Mr. Cheung asked again “Can I have braised pork with preserved vegetable and beer, please?”
• The wife said “Definitely not. You are a patient.”

The home care nurse interviewed Mrs. Cheung in the kitchen separately, checking her concerns and clarifying some of her myths.

• Mrs. Cheung said “It is impossible for me to cook such an unhealthy dish for a seriously ill patient.”
• The home care nurse guided Mrs. Cheung’s thinking and asked “Do you know why your husband has such a strong desire to eat braised pork with preserved vegetable, even though he knows it is unhealthy?”
• Mrs. Cheung replied “Many years ago, we used to enjoy this home-made dish with soft drinks and beer in the evening after long working hours. At that time, our children were very young and we did not have many enjoyable activities. This was one of the common activities that he could enjoy and felt relaxed at home. He seldom went out by himself and preferred watching our children play among themselves at home.”
• The home care nurse asked “What are the pros and cons for him to take this ‘unhealthy food’?”
• Mrs. Cheung said “He is ill and should take as much healthy food as possible. I understand that he wishes to bring back the memory of a previous enjoyable moment. But actually, he cannot tolerate the food and may even vomit it out.”

The daughter came into the kitchen and joined the conversation.

• The home care nurse asked “Do you know the reasons why he is asking for it, even though he fully understands that he cannot take too much of it and may even not be able to tolerate?”
• Mrs. Cheung said “Maybe he wishes to take it with us and recall the happiness of food sharing in the past. I am not sure. It seems to be the most likely reason. He is a disciplined person and seldom has any inappropriate requests.”
• The home care nurse further asked “If this is the reason, what would be your decision?”
• The daughter said “He likes it. Let him try. As long as there is no harm done to him and it is not contradicting with the medical and nursing advices.”
• The home care nurse answered “We have no objection in letting him try. As you know, the texture of this dish is very soft and can be easily dissolved in mouth. You can create a relaxing environment at home and share the food with him. Not aiming to make him swallow it, but just let him taste it and spit it out. The most important point is to create an enjoyable moment for him through sharing.”

After the discussion, Mrs. Cheung returned to the sitting room.

• Mrs. Cheung told Mr. Cheung “I am going to prepare your favorite dish tonight. Do you want a mouthful of beer too?”
• Mr. Cheung was excited and asked “Is it for real? I can have some beer too?”
• Mrs. Cheung said “Yes. I have never lied to you. But just a small amount. Not all is for you, we need to share together.”
• Mr. Cheung told his daughter “I always tell people that your mum is the most understanding and caring wife in the world.”

The patient’s daughter followed up the preparation of dying at home for handling the different situations that might possibly happen in the dying process, including the modification of basic care as the patient’s conditions further deteriorated, special arrangement with the funeral home, liaison with the relevant religious parties, arrangement of doctor home visits, handling of uncontrolled symptoms, and steps to take under special circumstances.

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Themes: Beneficence

– Dr. Lai Tze Kwan Theresa, Associate Professor of Practice cum Programme Leader of Bachelor of Nursing (Honours), Cartias Institute of Higher Education

The above scenario is a common situation that many dying patients and their family members encounter. They are supportive and want to do everything they can to fulfill the patients’ wishes and needs. At the same time, they are confused as to what is good for the patients.

In Mr. Cheung’s case, the background information reveals that he was a family man and wished to stay with his family most of the time. We feel a strong sense of separation grief from his dialogue with the home care nurse. His wife and daughter were caring, but unable to understand his true emotions and underlying intentions. They just focused on the practical issues and based their solutions on what they believed is good for people with advanced illness. We learn that they were all supportive, but no one could hear the inner voice of the patient except for the home care nurse.

What kinds of ethical principles are being considered?
We will try to explain the above scenario from the perspective of an ethical dilemma. More specifically, we are going to explain the application of the following ethical principles in his case one-by-one. They are autonomy, beneficence, non-maleficence and respect.

Autonomy: Mr. Cheung expressed that he wished to stay at home with his family members for as long as possible. His family members also supported his thought and managed his daily care routines well with the instructions and advices from the home care team. After the nurse’s assessment, it was highly possible that dying at home could be achieved if the symptoms of Mr. Cheung continued to be well under control in the near future. We respect the patient’s choice regarding the most suitable place of death.

Beneficence: It is clear that the choice of dying at home did not only benefit the patient, but also his family members. He knew what was going on and his wishes were acknowledged, thereby having a reduced sense of uncertainty. From the perspectives of the family members, they could spend more time with the patient and did not need to travel frequently between the hospital and their home. They could see each other more frequently without being confined by the visiting hours of the hospital.

Non-maleficence: When Mr. Cheung asked for the so-called unhealthy food, the home care nurse tried to guide his wife to think more about the underlying reasons why Mr. Cheung had such a request. Even though the food might not have much nutritional value for him, the emotional value could not be neglected. If the action does not do significant harm, but may bring subtle benefit to the patient, then it may be worthwhile to do so. Throughout the process, it is clear that the respect of his decision was fully demonstrated.

Respect: Mr. Cheung was a successful small business owner. He used to make major decisions for his business and family. He became a more dependent and vulnerable person due to his medical conditions. As his formal or informal caregivers, it is important to be sensitive and respectful of his wishes. On the other hand, we also need to respect the family’s decisions. If there are conflicts between the patient and his family, we need to facilitate their communication from different points of view and head in the same direction for the future care plan.

How does it work from a nursing perspective?
The Satir Transformational Systemic Therapy helps to explain the transformational changes of Mr. Cheung and his wife during the therapeutic process. The core elements include experiential, systemic, positively directional, change-oriented and congruence.

Experiential: Through the behaviors and conversations between Mr. Cheung and his family, we only know that he made a humble request to his wife that he wanted to have his favorite dish before admission. It seemed to be a simple request from a patient with advanced illness. His coping stance was likely to be “Placating” or “Congruent”, depending on the couple’s usual communication patterns. When we go deeper into the feelings of the patient, he might have experienced a sense of powerlessness and loss of control. His feelings could be sadness, fear and anxiety. His perception might be to simply have a good last supper with his family before being admitted to the hospital, from which he believed he won’t have a chance to be discharged again. His expectation might be to share a piece of memory with his beloved family. The yearnings from the bottom of his heart might be to be loved by someone and maintain the connections with them. The deepest level of his “self” could be “I am a loveable husband and father with harmonious family relationships.”

Systemic: By facilitating Mr. and Mrs. Cheung to experience their feelings and discover their needs, the home care nurse guided Mrs. Cheung to think about the pros and cons of addressing Mr. Cheung’s request. When she knew more about the patient’s needs and the underlying reasons of his request from a new perspective, her decision making was affected in a positive way within the interactive system.

Respect: Mr. Cheung was a successful small business owner. He used to make major decisions for his business and family. He became a more dependent and vulnerable person due to his medical conditions. As his formal or informal caregivers, it is important to be sensitive and respectful of his wishes. On the other hand, we also need to respect the family’s decisions. If there are conflicts between the patient and his family, we need to facilitate their communication from different points of view and head in the same direction for the future care plan.

Positively directional: By improving the mutual understanding within Mr. Cheung’s family, they were able to express their wishes and needs directly without hiding their emotions. Individual personal growth and the hopeful atmosphere created a more favorable environment for them to work out a realistic plan for Mr. Cheung, such as having a nice and simple meal with his core family members at home.

Change-oriented: Since a realistic hope was formulated, Mr. Cheung could express his worries and wishes directly. Mrs. Cheung could support her husband’s wishes and showed her love by performing the desired behavior, such as preparing the requested dish. The home care nurse helped them achieve transformational changes by empowering them using a down-to-earth approach.

Congruence: After establishing an open communication and therapeutic relationship, the home care nurse did not only take up the role of providing physical care to the patient, but also that of providing holistic nursing advices. She also helped Mr. Cheung keep a sense of living, instead of simply waiting to die. Since we believe that dying is only a part of our lives, the patient could still have something worthwhile to do even in his very late stage of life.

All of the above nursing perspectives focus on high-quality, compassionate and culturally sensitive patient care, and tailored to Mr. Cheung’s needs.