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Spiritual Dimensions in Nursing Care: A Case Study of Examining the Well-Being of Patients in Facing Death
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The spiritual care of patients in the end of life is very important not only for the patient but also for those supporting the patient during the final days. Spiritual care involves 1) a sense of oneness between nurse, patients and families; 2) providing patient-centered care; 3) bringing a spiritual health assessment to the spiritual healing process; 4) factual information to help patients understand about their illness and prognosis of disease; 5) respect for human dignity and employment of methods of treatment; 6) preparing the family to understand the methods of treatment, the loss of a family member and planning lifestyle after the death of that member. These nursing practices can assist in promoting peaceful death in terminal illness, including the opportunity to know the approximate time of death, coping with the symptoms suffered, maintaining personal dignity including the right and power to decide their own lives until the end of life without fear of death and filled with the hope of life after death, mindfulness and a peaceful death with love and unconditional forgiveness in privacy and without additional external life support. Spiritual nursing practices combine science and art to add value to human life.
Keywords: Spiritual nursing care, End of life, Peaceful death
INTRODUCTION
Nursing care has an important part in each human life from birth until death. It involves both a high level in scientific and artistic studies to be of most value for the human race. Florence Nightingale describes “Nursing is an art, and if it is to be made an art, it requires as exclusive a devotion, as hard a preparation, as any painter’s or sculptor’s work; for what is the having to do with dead canvas or cold marble, compared with having to do with the living body - the temple of God’s spirit. It is one of the Fine Arts; I had almost said, the finest of the Fine Arts” [1]. This statement reflects Florence Nightingale’s focus on the wholeness of being, that humans have a spirit that dwells within. Therefore, good nursing care is not only the best of physiological care but it is also working with the spirit deep within each person in the best way possible. Even when the patient has lost all physical abilities and is close to death there still remains the spiritual dimension [2]. Presently with improved medical science and modern machines and instruments available, the physical life patient has been extended. Most patients have chosen to be under the care of medical teams until the end of life [3]. Nursing is one facet of the health care team which must be prepared to address patients’ goals including physical pain management, psychosocial care and response to spiritual needs. All of these aspects can assist patients with terminal illness to a peaceful death [4]. This article discusses the approach to spiritual care through nursing experience which promotes spiritual well-being of a patient dying with terminal illness.
THE CONCEPT OF WELL-BEING DYING
The highest level of fear is the fear of death or losing the ability to control at the end of life. Throughout life many people have experienced enough success to be prepared for natural losses that occur at the end of life. But in the end, everyone must come to the point of understanding the truth that no one can escape death. And when that day draws closer, those who have not prepared are most afraid to face death even though it is a part of human life [5]. William Shakespeare has said “Cowards die many times before their deaths, the valiant never taste of death but once” [6]. This suggests that the fear that comes with the final breaths of life being the fear of pain and suffering related to death is something that happens all the time. But the person who is brave to face death and understands life experiences peace and well-being.
THE CONCEPT OF WELL-BEING DYING
The highest level of fear is the fear of death or losing the ability to control at the end of life. Throughout life many people have experienced enough success to be prepared for natural losses that occur at the end of life. But in the end, everyone must come to the point of understanding the truth that no one can escape death. And when that day draws closer, those who have not prepared are most afraid to face death even though it is a part of human life [5]. William Shakespeare has said “Cowards die many times before their deaths, the valiant never taste of death but once” [6]. This suggests that the fear that comes with the final breaths of life being the fear of pain and suffering related to death is something that happens all the time. But the person who is brave to face death and understands life experiences peace and well-being.
WHAT IS WELL-BEING DYING?
Even though death is one experience where there has not been a person able to come back and share about, there have been many studies about the experiences of people close to death enough to anticipate and explain how one can experience well-being in death. The author has reviewed these studies and is able to summarize the important qualities necessary to experience well-being in death as follows:
- A patient is able to know the approximate time table of when death will occur and is able to accept this fact positively.
- The pain, suffering and uncomfortable experiences are relieved to the point that the patient is able to face them with acceptance.
- When human dignity of the patient is considered and they are given the power to make decisions about their condition up to as far as possible in their life.
- The feeling of hope and satisfaction and purposefulness of life are evident.
- No fear of death in the spirit and hope for what happens after death. A spiritual belief that the patient will be escorted to the next level of life by the one whom the patient has served in their life.
- A steadfast feeling rather than loneliness at the time of facing death. Facing those last hours of life in a comfortable place away from medical smells and means.
- Free from any regrets or sins and experiencing unconditional love and forgiveness.
- The above characteristics for well-being in death show that when a patient comes to the end of life there is a need to respond to their physical, spiritual, social and personal needs. Their spiritual needs are considered to be the most important for a patient to experience well-being in death. Therefore, the following suggests ideas to care for the well-being of patients facing the last stages of life to meet their spiritual needs.
THE SPIRITUAL NURSING CARE OF WELL-BEING DYING FOR TERMINAL ILLNESS PATIENTS
The materialistic influence of our present society has received some positive feedback in meeting the physical and emotional needs of people. People enjoy being able to experience the ease of being in control of life around themselves according to their felt needs. Medical science has experienced major improvements in recent years which has made it possible for people to be in greater control of their physical bodies to the end of life. To the point that death is sometimes considered to be a negative experience and looked down upon. The picture of struggling with survival to the very end has become a more common experience in the hospital almost to the idea that it is possible for humans to have victory over death. In some cases, the more one struggles, the more they face pain and suffering. Sometimes the picture of the suffering of a patient to the last breath in the midst of medical equipment, unfamiliar people and place causes others to consider that if they are in the same situation, though they are not able to choose their birth, they would like to be in control of their death as much as possible. As a result, there is the option of writing a Living Will [7]. At the same time there are many who would prefer to spend their last days in a hospital where qualified people can care for them and help them to be as comfortable as possible. For example, wound care, infectious control, colostomy care, pharmacological pain control, oxygen therapy, etc. Presently the medical system of the Thai government as well as the private sectors have seen the importance of caring for patients facing the end of life. Through scientific reviews and interviews of people caring for patients facing death it is noted that their clear means and methods available to reduce the physical pain and suffering of patients nearing the end of life. However, there continues to be a lack of means and methods available to meet the spiritual needs of patients to experience well-being at the end of life. Present principles of nursing care to meet spiritual needs of patients to experience well-being in death include the following:
- Spiritual ceremonies such as inviting the monk or priest to give blessing or ask forgiveness
- Looking for ways to meet the needs of the patient such as the patient wanting to go home or wanting to see their children, needing forgiveness from a husband or wife, wanting to wear certain clothes, giving valuable items to appropriate people, etc. All of these are to help the patient to face death with a feeling that they have finished their work and can now rest
- Providing love and comfort encouraging the family to be near so the patient feels comfortable and warm [8-10]. However, as we reflect on materials available about the well-being of patients facing death, they suggest that caring for the spiritual needs of the patient that continues to be an area needing improvement.
The following are suggested ways that can help improve this area of need:
- A sense of oneness between nurses, patients and families
One important key in caring for spiritual needs is a close, loving relationship between the patient and family where they care for one another joys and difficulties and become one family together. There is the common feeling that the person facing death is a human being needing care and mercy. All of these help the patient to experience the closeness and warmth of relationship, to trust those around them and face their illness in a positive way. Nursing care among a close nit family increases moral sensitivity to the real needs of the patient both physical and emotional resulting in a greater desire to help reduce the pain and suffering using creative scientific measures and providing more consistent care [11].
- Providing patients-centered care
This shows love and unconditional forgiveness to the patient and family. The pain and suffering experienced causes the body of the patient to break down according to the disease. There might be large open wound or bed sores, colostomy bags associated smell odor from patients with cervical cancer, etc. - whatever the condition of the patient the nurse is able to respond to the patient with love without expecting anything in return, accept the actions of the patient and make a plan to care for the needs of the patient considering their personal differences, preferences, beliefs and cultures [12].
- Bringing a spiritual health assessment to the spiritual healing process
Spiritual assessments are important to lead toward spiritual healing in a patient. Spiritual health assessments include assessing the purposefulness and hope in life. It is important to understand their thoughts regarding life after death. If an assessment can be made of these areas, then decisions of care can be made to meet the spiritual needs of the patient. They also help patients facing the end of life to not feel hopeless or fearful but rather experience strength and courage together with hope, love and unconditional forgiveness. They are able to experience well-being in their spirit which is an important part of the death process [13].
- Factual information to help patients understand about their illness and prognosis of disease
The truth about illnesses and determining how a disease will run its course are important things a patient should have the privilege to know but these need to be communicated in a way that the patient is able to accept. Each persons’ personality needs to be understood to communicate in a natural and acceptable way. It is important and ethical to communicate these things so the patient is able to care for their life according to their wishes [8].
- Respecting Human Dignity
Respecting the human dignity of patients gives them the right to decide on their health options [14]. Nursing care is then according to their wishes toward the end of life.
- Preparing the Family
It is important for the family to understand and care for the patient in the final stages of life until the end of life. They are able to share love and make plans for life after the patient has passed away [15]. The immediate family is most affected when losing someone they love. Helping the family to make plans for after the death of their loved one helps them to be better prepared and able to accept the death of their loved one. They are able to face the sorrow with a minimum of effect on their spirits. When the family has been prepared for the death of their loved one, they are better able to help their loved one facing the end of life.
EXAMPLES OF SPIRITUAL NURSING CARE FOR WELL-BEING OF A PATIENT DYING WITH TERMINAL ILLNESS
The story of Thongkham Jitaree (not a true name). This is the story of Thongkham who has colon cancer. It comes from the experience of those who care for patients with these types of conditions at Nakhorn Phanom Hospital, Thailand. They devoted much time and overtime to spiritual care for terminal illness patients. This narrative may be of benefit to health professionals in the future.
- Oneness with patient and family
Mr. Thongkham Jitaree (made-up name) is a 37-year-old patient in the last stages of life on bed #20. The painful cries from the patient are heard by the late-night nurse are difficult to listen to as she considers that this patient is so young, the head of his family with little children - she can’t imagine what is going to happen. At the end of her shift, she makes another round to check the patients before handing them over to the next shift. A pre-conference is held to explain the methods of care for each patient. This is what happens every day. But today she would like this process to pass quickly. After everything is finished the nurse quickly makes another check on the patient in bed #20. The picture is of a Thai young man, very thin - just skin covering the bones, sunken face and eyes, abdominal distension, colostomy wound in the abdomen covered by a colostomy bag and his breathing is labored (dyspnea). Next to the bed is his wife holding their 7-year-old son on her lap. It’s a picture that brings such a heavy heart that she draws near the bed of the patient. Her heart goes out for the patient as well as the family. She is deeply touched and feels their sorrow. Her voice and eyes looking at the patient and family show her care and understanding. “Mr. Thongkham returned from Ubon - how was it” This short question quickly built a strong bridge of relationship between her and the family. For over an hour the patient and wife were able to share their problems with the nurse. The next day the wife was waiting for the nurse. When she saw her, she quickly walked up to her, took her hand and walked her to the bed of the patient and said “now what are we going to do?” The way she spoke and her actions showed that we were now relatives and family - the same as her own feeling that we were now family and felt the pain of this experience together. This causes the nurse to see their patient and respond to their needs as if the patient were a part of their own family.
Critique of the conversation: This nurse displayed how to care for patients with love and shared in their sorrow which is a beginning point in developing relationships. She was available to listen to problems and needs of the patient and family and felt their sadness and joy to the point that a trust relationship had begun.
- Providing patient-centered care
The final days of Thongkham were very difficult because he was faced with the loss of control of bodily functions at a time when he was still young and everything happened so quickly. Thongkham had colostomy bag to help take away waste from his body, lost other functions because of pain and had to depend on others to care for him. Surgery which forced him to spend his final days in the hospital because of complications due to open wound in the stomach that leaked out bodily fluids resulting in the need for close nursing supervision. He was so thin that colostomy bag used to keep him clean were too big resulting in leakage. He was very tired and weak because of lack of oxygen. Oxygen was provided to help him breath. His needs and the hours needed to care for him were much more than other patients. Special care was provided due to his circumstances such as assigning the more experienced nurses to care for his wound, assigning a doctor specializing in colon cancer, arranging for a nurse specializing in psychology to work with the team in caring for the patent. Relatives were allowed to stay with the patient with no time constraints. He had oral aphthous that his doctor planned to order an oral paste but he needed to use lozenges. The nurse suggested that his doctor make the change, and he ordered a variety of flavors to please the taste of his patient.
Critique of the conversation: This type of nursing considers the needs of the patient which can vary from person to person. It is a type of nursing that gives high value to the patient and family without being too strict with procedures for the benefit of the patient.
- Spiritual Health Assessment leading to Spiritual Healing
After closely caring for the patient for a period of time, the patient began to share more and more with the nurse. His words began to reflect his spiritual needs such as the meaning and purpose of life, beliefs about death and life after death according to the examples as follows.
- Conversations about the meaning of death
Patient: Death for me is eternal separation. I miss my children and wonder how they will be without me.
Nurse: I am an orphan. My parents died long ago. I was very much attached to my father. When my father died, I was very sad. I missed him so much, especially when I faced problems or had to travel anywhere far. Sometimes I forgot and telephoned to tell him that I arrived at my destination safely like I had always done before.
Patient: What did you do to comfort yourself?
Nurse: I was lucky that when my father was alive, all of us children were able to share with him everything. Our father taught us everything and many of his decisions are a part of our lives even today. I always thought that my life came from my father and mother, therefore my father and mother are within me. They come and go with me all the time. If we do good things, our parents never die because people still spoke well of them through our lives.
Patient: My parents are still alive but I have not lived with them since I was young because I had to work. After that I got married and had a family so I lived together with my family. Sometimes I went away to South Korea to work until I fell sick. Now that my parents have heard about my sickness, they encouraged the family to come visit. I don’t want them to be burdened because it is so far for them to travel and both of them have hearing and sight loss.
Nurse: That’s true. Our parents are concerned for us all the time no matter how old we are, even if we have grown up and live their own lives. Mr. Thongkham, you are a father and it is natural for you to be concerned for your children. Mr. Thongkham, as a child of your parents, you don’t want them to be burdened with you.
Patient: Smiling. We have been talking a while and you have helped me feel better about my children. My children will have to grow up just like I did. They will have a life and future of their own whether I am with them or not.
Nurse: Mr. Thongkham, you are always with your children as long as they are alive. Your life and blood, the good things you did for your children and the things you taught them were the best and will help them throughout their lives.
Patient: Really?
Nurse: Really. I am an orphan and I can guarantee that when my father was alive, he was concerned about his three children always fighting among each other. He often questioned how we would survive if he were to pass away. When we don’t have our father with us anymore, the three of us get along together well, care for one another and love each other.
Patient: I probably need to take some time to talk more with my children. This is good timing because I have prepared some things that they want.
Nurse: That’s great. Today Mr. Thongkham needs to rest a bit. We have talked a long time now. When I come back from Udorn, I will come to visit you. Is there anything you would like?
Patient: (Laughing) No thank you. I couple of days ago I had some Dok Jok desert already.
Critique of the conversation: The conversation between a nurse and a patient reflects the spiritual counseling healing process to assist the patient concerned about death and family. The nurse used skills to present self-disclosure, reflection and active listening until the patient understood the reality of life and found the way to use the remaining time with his son, confident in what he has done while he was alive.
- Conversations about the purpose and meaning of life
Patient: While I am experiencing suffering, I would like to say that I have received a lot of good things, more than I expected (voice is shaky and his eyes cloud up with tears). I was in South Korea for a long time - much of that alone on my own. I didn’t have much time to be close to my family. But now during this time of sickness I am with my wife and children all the time. I have asked myself before if my wife really loved me or not and why would she love me. But coming to this point I know she loves me and does not look down on my condition.
Nurse: You are a very lucky man. I have seen that your wife is very attentive to you all the time. More than being aware of her love for you have you experienced other good things in the midst of your sickness?
Patient: There is something that has been hard for me to understand for a long time between myself and some of my relatives. During this time, I want to ask their forgiveness and talk to them but I don’t see how that is going to be possible. My relatives come and visit me often, buy things for me (eyes cloud up in tears). I have never understood how we who have never gotten along together, never done things together, how they can forgive me. I have thought that if I had not gotten sick like this, I would never know their feelings toward me. You may ask if it is suffering, I would say so. If you ask if there is joy, I would say I have never experienced joy this much before.
Nurse: Really, our life doesn’t demand a lot more than that - meaning experiencing love and receiving unconditional forgiveness. We meet up with joy and are encouraged even in the midst of suffering.
Patient: I have asked myself why I have such a short life.
Nurse: Have you thought of what you would like to do if your life were longer?
Patent: I have thought that if I finished building my house, I would invite my parents who are quite elderly to come and life with me.
Nurse: Have you shared this with your parents?
Patient: I have shared this with them many times but my parents said they wouldn’t come. They want to care for their grandkids - the children of my younger sister. They also want to live in Srisongkhram and not move anywhere else. The other day they came to visit and were carrying their granddaughter too.
Nurse: Really Mr. Thongkham, you have completed your goal in life. It’s just your parents prefer to live in their old house.
Patient: That is true. My parents probably wouldn’t be happy if they could not care for their grandchildren and leave their own home.
Nurse: From what I have heard, I think you have done the things you have wanted to do. That is something that many people don’t have the opportunity to complete their life purposes.
Critique of the conversation: These conversations reflect that the family has a significant effect on the meaning of life of patients. The best relationship can contribute to the patients’ interpretation of illness in a positive manner. The nurse used open ended questions to help the patient reflect and review important events that have happened in his life resulting in the patient having clarity of thought regarding the purpose of his life.
- Conversations on facing death and the hope of life after death
Nurse: From previous conversations I remember that you were looking at death as an eternal separation. For me death is returning to God. Through the death of Jesus Christ on the cross I am able to escape from the results of sin. Death is like being reborn in heaven. How about you, what is your belief?
Patient: I am Buddhist. I believe in heaven and hell as well. If we think good thoughts, do good deeds we will then go to a good place like heaven. If we think bad thoughts, do bad things, then we will go to hell.
Nurse: I noticed that you wear holy necklaces and worship at the head of your bed. What do you believe about these things?
Patient: I just wear the necklaces but don’t have any expectations of them. Last night I dreamed that I was asking my friend to return some money he borrowed but he refused to give it back. There were 2 men who escorted me somewhere. When we got there, they sent me back. They said it wasn’t time to receive me so they brought me back. When I woke up, I felt very tired.
Nurse: What do you think about this?
Patient: I think that I am not ready, therefore they did not receive me.
Nurse: Really, do you feel afraid for that time to come?
Patient: I’ve come this far; I am no longer afraid.
Nurse: When that time or second comes of which no one knows when that will be, I wish you to be brave, close your eyes and think of good things. Don’t be tied up with painful issues, don’t feel anger but rather forgive in order that your soul can be free to go to the beautiful and peaceful place according to your belief.
Patient: I feel confident that I will go to a good place because before this I dreamed the head monk came and knocked on my skull giving me blessings just like when I was healthy and visited him often.
Nurse: I feel happy to hear you speak like this.
Patient: (Bringing both hands together in obeisance; giving a Wai) I want to thank you too. I will not forget the things you did for me. May you continue to grow and experience joy.
Critique of the conversation: From this conversation, even though the patient had amulets around his neck and offerings at the head of his bed, they had no special meaning and did not provide any hope or comfort that he could hold on to. The patient believed that the good things he did in this life would give him a good life after death. The nurse helped to patient to be clear about his beliefs and encouraged the patient to do the things necessary according to his beliefs in order for him to be confident in his heart and ready to face death.
- Factual information to help patients understand about their illness and prognosis of disease
In the case of this patient, the doctor did not clearly give a prognosis of the disease for the patient to know but did tell the family and relatives. The relatives decided not to tell the truth to the patient. The nurse therefore had to care for the patient accordingly to the point that when the disease got worse the patient was able to understand on his own by saying
Patient: Will I ever get well?
Nurse: How do you think about your illness?
Patient: I don’t think I will survive this. I feel sorry for my children and wife – they will find it hard to accept.
Critique of the conversation: Giving an explanation of what is happening is something the patient desires the most in order to make plans and choices for the life that still remains. The nurse should appropriately help the patient to understand the facts about the disease and the prognosis for the benefit of the patient and family.
- Respect human dignity
It is important to give the right and privilege to make medical choices to the patient and do everything according to the final desires of the patient. This patient wanted to care for himself at his home in order to be with his children. But his younger sister who worked in another district wanted him to be treated in a hospital. The nurse talked with the sister to help her understand the patients’ desires. She prepared all the medical supplies that would be needed for the relatives and arranged for the district office to provide oxygen for the patient while at home. The patient was home only one day before passing away peacefully.
- Preparing the Family for Death
When the family has a long time to look after the patient, they are able to understand and accept the imminent death of their loved one a lot better. They are able to prepare and plan for life without the patient being around to help. They are able to prepare for when the patient is no longer with them.
ADDITIONAL CONSIDERATIONS
- An ideology of death is related to symptoms and the severity of disease. If patients accept and are not afraid of death, they can battle death when threatening symptoms arise and suffering increases.
- In the context of the culture of north-eastern Thailand, many people perceive death as an evil. They will not talk about death. The nurse used the time and good relationship to sensitively reflect and interpret the behavior of the patient.
- Some information can be obtained from relatives and observing the relationship between the patient and his wife. It is during this time that the patient may express his spiritual needs. For example, the meaning of death for the patient was complete separation. The patient expressed this with his wife saying “It won’t be long before I die. I am worried about the children”.
- In providing care for terminal illness patients as they battle death, it is essential that nurses extend spiritual life care because spiritual growth will promote an understanding of the reality of human life. Spiritual experiences are important for positive impact on spiritual care.
- The nurse must have an agreement with the relatives and those caring for the patient so that everyone is ministering in the same direction. It was observed that the wife continued to encourage the patient that they would get better and be healed of their disease because other patients who have had colon surgery have recovered well from it. This type of encouragement was not true and could cause the patient to feel pressure to get better because they don’t want to disappoint their loved ones and family. The nurse needs to look after the spiritual needs of the patient and help the family and loved ones understand how to care for the patient. For example, the nurse needs to explain how loved ones should communicate with the patient, how to respond to the physical problems and smells related to the disease in order to help the patient feel comfortable and accepted.
SUMMARY
The spiritual dimension of nursing is crucial for patients with terminal illness. The spiritual aspect of nursing can assist patients to a peaceful death in the case of terminal illness. Spiritual nursing care combines with science and art to add value to human life. Spiritual care is care from the spirit.
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