Opening Case Study
“I think of my life in two stages. The first stage of life was before kidney disease, or at least before I was given the diagnosis of having kidney disease. The second stage is after kidney disease, which started when I was diagnosed last month.”
Judy, a dialysis technician in the dialysis clinic of the hospital where Martina is being treated, often provided a listening ear to patients as they received their dialysis treatment. Martina told Judy how, while she had been retaining water and feeling her energy declining, she had nevertheless been surprised when she was told by the healthcare team nephrologist, Dr. Christoff, that she had kidney disease.
“I felt like everything I had worked and planned for was being snatched out of my hands. Life was dealing me the worst hand possible. I never thought God or whoever is in charge of things would decide that my fate was to have kidney disease. Is this the only meaning that I am going to have in life?”
Keep in Mind: Newly-diagnosed patients often question what they did or didn’t do to deserve their condition. If you were working with a patient who was beginning to discuss their condition from a spiritual perspective, what would be your initial concerns?
“People were always saying to me, ‘You don’t need to do so much for me, Judy. You always do so much.’ Thinking back, I am sure that I was sort of hoping that if I did a lot of good things for other people, like if I really went overboard to be the best person possible, that nothing bad would happen to me.” She shook her head. “That was kind of stupid on my part, right?”
Judy wanted to be a supportive listener for Martina. While Judy has her own religious beliefs, and would like to have shared them, she knew that what Martina needed most at this was an opportunity to share her feelings, especially the feelings that she might not feel comfortable sharing with family and friends.
Martina’s diagnosis appeared to have caused a spiritual crisis. From experience, Judy knew that if Martina continued to feel that her life had no meaning, then she might also become easily discouraged with her treatment and not care if she got better or not. Judy also knew that it was important for kidney patients to be compliant, and Martina would need to be dedicated to staying as healthy as possible to help her meet the challenges of lifestyle changes and dialysis treatment.
Keep in Mind: When healthcare professionals have a patient who is in the middle of a spiritual crisis, they are often reminded of their own experiences with spirituality and organized religion. This can result feeling helpless and wanting to ‘fix’ the patient’s problem or, on the other hand, wanting to completely avoid the topic of religion. Are there aspects of Martina’s spiritual concerns that would result in your own feelings of helplessness? How would you react to feeling this way?
Judy had always been involved with the church. Her parents had attended religious services when she was a child and the Sunday routine of getting up early to go to church had been so ingrained that, as an adult, she maintained the same routine with her own husband and children. Therefore, when she saw that Martina was clearly having questions about life’s meaning, she thought that she could benefit from spiritual direction. However, while she would have liked to talk more to Martina about her own religious beliefs, she had learned that patients can benefit most from encouragement to seek a spiritual path that they are most comfortable with, that fits with their own backgrounds and views, without feeling pushed toward a path with which they might not be comfortable.
“I feel lost,” Martina answered. “I feel like my life is never going to be the same again, and I’m not getting any answers about what I should be doing instead. Like I said, it’s like I’ve been abandoned by life.”
Keep in Mind: While not a spiritual counselor, Judy knows that as a healthcare professional, she has an opportunity to encourage a newly-diagnosed patient to enhance her well-being through spirituality. What questions or concerns would you have as you approached this situation?
Introduction
“I’ve never thought about the meaning of life until this week.”
Newly-diagnosed patients often have questions of a spiritual nature, beginning when they are initially diagnosed, as well as during initial treatment and beyond. These questions take many forms. They may include general questions about the meaning of life, as patients reevaluate their purpose in life – and even question whether they have a purpose – as they consider what their lives will be like as they face the challenges of illness. The ‘why me?’ question may be asked from a spiritual perspective, with questions around being singled out to carry an additional burden, or abandoned by God, or even punished for some reason. Questions around the existence of God, or the concept of a Higher Power, may arise.
A diagnosis can also lead to a desire to connect, or reconnect, with a greater meaning, God, or their concept of a Higher Power. Newly-diagnosed patients may also seek to bring more spirituality into their lives, as a means of finding a greater meaning beyond the day-to-day experience of illness, and to cope with the stress and discomfort that they may be feeling.
Spiritual issues may arise immediately upon receiving the diagnosis for some patients. For others, these issues may be arise after they have faced difficult emotions and, consequently, may be looking for spiritual answers. Difficult emotions like anger may be connected to spiritual questions, such as when newly-diagnosed patients experience anger at God.
Relationships between healthcare professionals and patients can greatly benefit when patients embrace spirituality as they define it. Spirituality contributes to a sense of peace and well-being. Spirituality can contribute to an attitude empowerment which can, in turn, have a positive impact on motivation to remain compliant with treatment and lifestyle regimens, as well as promote an overall sense of wellness.
Healthcare professionals can support newly-diagnosed patients in their spiritual journeys be, first and foremost, being willing listeners. In many ways, non-judgmental listening is a spiritual act in and of itself. Furthermore, patients may have no one else but their healthcare professionals to serve as a listening ear, because their own friends and family members may be dealing with their own spiritual crises, or they may have agendas that they, in turn, want to impose on the patient. The goal of these discussions around spirituality is to encourage patients to make their own spiritual connections and, within ethical guidelines, offering resources for them to explore.
The Starting Place: Being Aware of Your Own Spirituality
In this chapter, the words ‘spirituality’ and ‘religion’ are being used. However, this is not to imply that these words are interchangeable. For the purposes of this chapter, religion applies to formal denominations that have a set of beliefs and practices, such as Christian denominations like the Catholic or the Methodist churches, Judaism, Islam and Buddhism. Spirituality is more broadly defined, and includes the desire to find meaning in life, to have a purpose, and to connect with one’s inner self or to a Higher Power. Spirituality may lead someone to embrace a religious denomination, but it can also lead to practices like meditation, spending time in nature, giving to others, and reading inspirational books.
In order to serve effectively as a listening ear for newly-diagnosed patients, it is important for healthcare professionals to be comfortable with their own personal spirituality, as they define it, and to feel comfortable listening to alternate beliefs without judging or feeling the need to change them. This awareness may lead some healthcare professionals to a high level of comfort in discussing spiritual issues, and a desire to help newly-diagnosed patients to explore their own spirituality whenever the opportunity arises. Others may decide that they are not comfortable discussing spiritual issues, or that some topics are more comfortable than others. Either way, healthcare professionals can benefit from being aware of their comfort levels so that can effectively communicate any boundaries to patients.
Also, it is important for healthcare professionals to be aware of any policies or guidelines of the institution at which they are employed that apply to conducting discussions about religion with patients. However, some institutions also provide resources that might be helpful for patients. Again, awareness of guidelines and resources is a means of avoiding any ethical issues that might arise and being as effective as possible in helping patients through crises that they may be facing.
Keep in Mind: How would you define your own approach to spirituality? What place does it have in your life? What in your own experience is the difference between spirituality and religion, or are they the same?
The Spiritual Impact of a Medical Diagnosis
Newly-diagnosed patients can express their spiritual impact of their diagnosis in many ways, including:
Figure 10-__
An illustration of a patient with a thought bubble, ‘What is the meaning of life?’
Considering the Meaning of Life
Paula’s Story
When Paula received her diagnosis, she described the experience as ‘my spiritual awakening.’ This was important to her because, before being diagnosed, she had never been involved in any kind of organized religion, nor had been involved in an informal spiritual practice.
“After I went through the shock and the all the emotions, I started really thinking about my life in a different way. It wasn’t what I would call in a religious way, because I wasn’t feeling religious. My diagnosis wasn’t necessarily life-threatening but it made me realize that I couldn’t take my life for granted, that it wasn’t guaranteed that I would live forever. And that made me think about what I had accomplished so far in my life and the impact I had made on others. I felt like my diagnosis had given me the opportunity to really take a look at my life in a different way, and to think about whether my life was going to have some kind of meaning. And then I started asking what kind of meaning life was supposed to have. I had never asked that question before.”
Experiencing Life in the Here and Now
Nathan’s Story
Nathan’s diagnosis felt like ‘someone turned the lights on in my life.” Learning that he would be facing a serious medical condition resulted in a new awareness of the world around him, especially of the things he valued most in life.
“After I met with the doctor and she gave me my diagnosis, I came home to an empty house. My wife was still at work and my daughter was staying after school for cheerleading practice. So I sat in the living room, thinking about the best way to break the news of my diagnosis. I was glad for the time alone. Sometimes my favorite classical music helps me to relax and so I turned the stereo on and put in a CD. I laid on the couch and suddenly the music felt so intense… I can’t think of any other way to describe it. I could hear the music and I could feel it. For a second I wondered if I had a new sound system. It was like my soul woke up to what was important – I mean really important – like enjoying beautiful music. When my wife got home, I held her for a long, long time. Later, she told me that, at that moment, she knew that something was wrong, but she also knew that something was right. Our relationship has never been better.”
Figure 10-__
A photo of Emily
Feeling a Sense of Peace
Emily’s Story
Emily recounted how she ‘went through a storm and landed on a peaceful shore’ coming to a place of acceptance that, while not religious in the traditional sense, left her with a sense of being more connected to the world around her.
“After I received my diagnosis, I learned everything I could about my condition; some of the information was encouraging and some not so encouraging. This left me with answers and with questions, many of which my doctor was not able to answer. Mainly, I wanted to know how long I was going to live.’ I sat with that question, and I kind of went into myself – I guess you could say I did some soul-searching – and thought about whether I wanted to focus on how uncertain life can be or how wonderful it can be. I decided to stop struggling and accept life as it is. This left me feeling a peace that I had never experienced before. It was the peace of just accepting life on life’s terms and moving on.”
Asking ‘Why me?’ From a Spiritual Perspective
Pedro’s Story
The ‘Why me?’ question, as discussed in Chapter __, is essentially spiritual in nature. When newly-diagnosed patients ask ‘Why me?’ they are basically asking why they were chosen to face a medical diagnosis, whether by fate, or God, or another form of a Higher Power. Pedro, who was an active churchgoer, asked this question in terms of God.
“I wanted to know why God had either chosen me to face this disease or why He had stood by and allowed it to happen. Either way, He had let me down. I went back and forth in my own mind, trying to come up with some kind of answer, and I called out to God to answer it for me. After all, I thought that I had been faithful all my life, always made it to services, helped out in other ways, treated people decently, and gave as much money as I could. Who deserved to be healthy more than me? Nobody. This went on for awhile, me thinking that I would punish God back by leaving faith behind. Finally, I talked to my priest and he helped me to get some perspective. I kind of ended up turning the ‘Why me?’ into “Why not me?’ In other words, I knew that I was going to find the strength to get through this challenge, and I was going to grow from it. That’s what helped me get through it.”
Feeling a Sense of Urgency
Julia’s Story
Julie experienced her medical diagnosis as a ‘wake-up call’ to take a look at what she had accomplished in life and what she still had ahead of her. She described this as a sense of urgency to move forward with her dreams and to make a greater contribution to the world.
“I was what you might call an underachiever most of my life. You know, lots of potential, lots of interests, lots of plans… but I never seemed to be able to follow through on any of my goals long enough to see them through. I looked at my life differently after receiving the diagnosis. I felt like I had been taught a lesson that I needed to learn, and the lesson was that I had something to offer the world and if I didn’t get busy and start contributing to my own life and to the lives of those around me, I might not have much to show for my life. Once my treatment was scheduled, I committed to a plan for what I would do with my life once I had it behind me. I wanted my life to count for something.”
Withdrawing into Contemplation
Lucia’s Story
After receiving the news of her medical diagnosis, Lucia withdrew from her friends and family for long periods of time to retreat into silence. While they initially feared that she was depressed, Lucia described this as a need to ‘find my true self.’
“I had never been into meditation or anything like that. But my diagnosis made me want to find my own inner strength. I felt like I had been so caught up in the rat race of life that I didn’t know how to listen to my own inner voice anymore. I needed to hear that voice again, and the only way I could knew to do that was to shut up for awhile. I went away to a bed and breakfast for a long weekend, and spent a lot of time sitting alone and thinking. When I came back home, I found that I needed some quiet time every day. Over time, I felt like I final made contact with my true self, and was going to be able to face whatever was going to come my way.”
Figure 10-__
A photo of Saul as a child, possibly at his synagogue.
Reconnecting with a Childhood Religious Practice
Saul’s Story
Saul was an active professional, with a busy travel schedule and long work hours. When he was diagnosed, he felt the need for a sense of stability and comfort that had been missing in his life. This need brought him back to the religious practices of his childhood.
“I was brought up in a religious household but, when I left home, I no longer saw the need for what I thought was a lot of unnecessary laws and rituals that didn’t fit into my modern lifestyle. But when I received my medical diagnosis, it was the laws and rituals that I that brought me back to my faith. My diagnosis was so unexpected that I felt like I had no control over anything in my life. My religious practices gave me a sense of being protected. I felt like as long as I practiced my religion, I would have an anchor, as my parents before me, and the generations before them, had had.
Being Encouraged by Others to Embrace a Spiritual Being
Grace’s family reacted to her diagnosis by talking to her about her relationship with God. While understanding their concern, Grace was also alarmed and angry at their insistence that she embrace beliefs which were different from her own.
“I was a little surprised when they all showed up at my house and told me that I was in spiritual danger. I didn’t think I was at death’s door, and I also didn’t think that I was a bad person. But I also knew that they loved me and that they only wanted to help me in the best way they knew. I told them that I appreciated their concern but that I would make my own decisions about my spiritual life. To be honest, their behavior kind of turned me off from any kind of spirituality for quite awhile, until I could think things through and go back to my own spiritual path.”
Keep in Mind: Think about situations in the past about individuals you have known who have faced a medical diagnosis. Did you witness any of these individuals questioning their spirituality, or seeking a greater spiritual connection, as a result of the diagnosis?
How the Spiritual Connection Impacts the Patient-Professional Relationship
As discussed in previous chapters, healthcare professionals are not expected to function as mental health professionals, nor is this within the scope of their training. By the same token, healthcare professionals are not expected to serve their patients in the role of spiritual counselor. However, in the Introduction to this chapter, the benefits of spirituality to newly-diagnosed patients, both to themselves as well as to their relationships with their healthcare professionals were briefly highlighted. These benefits are further discussed below, as are some areas of caution.
Figure 10-__
An illustration of the benefits of spirituality, based on the subheads below.
The Benefits of Spirituality to the Newly-Diagnosed Patient
Healthcare-related benefits of spirituality include:
A Sense of Community With Others
Whether one is actually attending religious services or pursuing spiritual practices on his/her own, spirituality provides a means of feeling of being part of a community of others who hold similar beliefs. Ideally, a spiritual community includes individuals who are able to reach out to the newly-diagnosed patient to offer both emotional support as well as spiritual guidance, possibly from individuals who have experienced similar challenges. Involvement in a spiritual community can help patients to deal with feelings of iSaulation, and serve as a form of support group.
A Sense of Being Connected to Something Larger
When facing a diagnosis and treatment, it is human nature to focus on the ‘small stuff,’ including the daily fears, frustrations, and discomforts. At some point, this focus can become detrimental to the patient because, in the absence of other concerns, each issue that arises can begin to feel more serious than it needs to be, so that the days are filled with one ‘crisis’ after another. Most spiritual practices encourage the belief in a Higher Power that is greater than the challenges of day to day life. This belief can, in turn, help patients to maintain a perspective on life and, potentially, take the daily disappointments and challenges in stride.
Hope and Optimism
Each religious denomination offers members a way of maintaining hope and optimism. Some accomplish this through adherence though focusing on the positive side of life, that is, viewing ‘the cup as half full instead of half empty.’ Others encourage acceptance of suffering as a means of growing in wisdom and inner strength. Still others offer the possibility of an afterlife that is free of the pain and suffering experienced on earth. Regardless of the specific beliefs, adopting these beliefs can result in an increased ability to face whatever daily challenges a medical diagnosis may present.
Reduction in Anxiety
Newly-diagnosed patients often feel anxious, for reasons that include dealing with the daily uncertainty in terms of what challenges their diagnosis and treatment might present next, how they will cope with these challenges, as well as concerns regarding their own mortality. Anxiety is related to feelings of fear and helplessness, and spiritual practices, including prayer and meditation, can reduce anxiety (REFERENCE).
Healthcare Professionals and Spirituality
When newly-diagnosed patients embrace spirituality, their relationships with their healthcare professionals can be enhanced. Patients who have an optimistic attitude toward their treatment, and who are hopeful that it will be successful, are more likely to be compliant with their treatment (REFERENCE). They will follow medication regimens, as well as recommendations for recovery and lifestyle changes. The support that patients experience through spiritual practices has both psychological and interpersonal benefits which also have a positive impact on willingness to be compliant with the recommendations of their healthcare providers. In turn, compliant patients make the jobs of their healthcare professionals easier.
Spiritual practices can be helpful in reducing fear and anxiety. Newly-diagnosed patients who are less anxious may also communicate more effectively with their healthcare professionals (REFERENCE), including asking questions, remembering the information they are provided, and reporting symptoms and side effects.
Reacting to Questions With a Spiritual Dimension
During day-to-day interactions with newly-diagnosed patients, healthcare professionals are often in situations in which spiritual issues are brought up, often within the context of discussions around coping with the condition and its treatment. Patients may, for example, discuss their hopes and fears in terms of their spiritual beliefs, or may express concerns over their lack of spiritual involvement during this time. They may ask their healthcare provider for spiritual advice, or for a referral to someone who can offer this advice. Or they may not have anyone to discuss these issues with and may be looking to their healthcare professional to provide a listening ear.
Often, healthcare professionals feel uncomfortable in discussing spirituality with patients. They may be uncertain about their own beliefs, or may have strong beliefs but be hesitant to discuss these beliefs with patients. Healthcare professionals who do not think that there is a relationship between spirituality and the promotion of wellness and effective communication may view spirituality as irrelevant to their professional relationships with patients. Furthermore, medical offices and hospitals often have strict guidelines regarding the discussion of spirituality and religion with patients.
It is important for healthcare professionals to have an awareness of their own spiritual beliefs, however they choose to define them, or whether they choose to embrace any spiritual beliefs at all. It is also important to be well-versed in organizational guidelines around discussing spirituality. This will provide healthcare professionals with a comfort level, and self-confidence, in deciding how they want to have these discussions or whether it is appropriate to have them at all. Regardless of the healthcare provider’s personal interest in discussing spiritual issues with patients, many organizations provide resources to which patients with spiritual issues can be referred.
Key issues that arise for healthcare professionals around the spirituality and newly-diagnosed patients are discussed below:
Figure 10-__
A photo of a healthcare professional looking away from a patient.
Keep in Mind: If you were going to be totally honest with yourself and describe your initial reaction when you find yourself in a conversation that involves religion or spirituality, how would you describe it. Most likely, you may have a similar reaction when spiritual issues come up with patients.
Accepting the Urge to Avoid
Ali, a respiratory therapy technician, finished giving a breathing treatment to his patient, Olivia. Noticing that she seemed to be feeling sad, he decided to spend a minute to see if he could cheer her up before moving on to his next patient. “How are you doing today?” he asked.
“Not so good. I have a lot of questions today,” she answered.
“Anything I can answer for you?”
Olivia, hesitated, then said, “Maybe you can,” she said. “I know that you work with a lot of patients who are sick and don’t know why something like this has happened to them. But since you talk to these patients, maybe you have some answers. So let me ask you a question. Do you think God has turned His back on us for some reason?”
Ali didn’t want to have this conversation with Olivia. First, he wasn’t sure how to answer the question. He had been raised in a religious household but was not currently practicing his faith. He was worried that, if he did try to answer the question, he might say something wrong and do harm to Olivia. Furthermore, he wasn’t sure what the hospital was regarding having religious discussions with patients.
“You sure seem to be breathing better today,” Ali said. “You’re doing a little better every day.”
What’s going on with the healthcare professional
When healthcare professionals are faced with uncomfortable conversations, it is natural to regret having the topic even come up and it is human nature to want to avoid it completely. Ali avoided the question by ignoring it and focusing on something that he could talk about comfortably which, in this case, was evidence that his patient has improved. He thought that, upon hearing this news, Olivia might be willing to ‘forget’ about her spiritual concerns. He may have been successful in accomplishing this goal but, more likely, he left Olivia feeling that her needs had been ignored and, potentially, that she had been disrespected. At the same time, if Ali was uncomfortable with conducting a conversation around spirituality, and unsure of his professional boundaries, he was correct in avoiding it.
Healthcare professionals feeling discomfort around discussing spiritual issues can successfully avoid these discussions and honors the patient by:
- Acknowledging that spiritual questions are normal during times of uncertainty
- Admitting to feeling uncomfortable or unqualified
- Suggesting an alternative resource
Suggestions for responding to newly-diagnosed patients when uncomfortable discussing spirituality are provided below:
What not to say
- “I don’t want to talk about God with you today.”
- “I want to focus on your medical issues.”
- “Everything is fine. Let’s focus on the positive.”
- “I have other things to go over with you.”
What to say
- “It is normal for patients to have spiritual questions when they are diagnosed with a medical condition.”
- “I am not the best person to talk about spiritual issues with, but I can help you to find someone who is more qualified.”
- “Religion is a deep discussion. Do you have someone you can talk to about God?”
- “I can see you have some spiritual issues you want to talk to some about. Do you need help finding a clergyperson? I have some ideas about how to do that.”
Figure 10-__
Illustration of a healthcare professional with a thought bubble with the word ‘ethical?’ inside it.
Avoiding Ethical Concerns
Nicole had been devoutly religious since she was a child. She was born in a home in which daily life revolved around the teachings of her denomination, which was a source of inspiration and peace through high school, nursing school, and into her adult life as a wife and mother, as well as a professional. When patients from a similar background, of which there were many in her community, wanted to discuss their faith, Nicole was always eager to share her own story.
Nicole was worried about Carl, a patient at the hospital clinic she worked at. He had come in complaining about leg pain that was eventually diagnosed as a condition that would require a lengthy treatment. Carl had reacted to the news of his diagnosis without emotion and he came alone to his next appointment. When Nicole asked him he had support at home to help him during the treatment, Carl had responded that he ‘didn’t need anybody but himself.’
To Nicole, Carl’s attitude was that of someone who had no spiritual foundation in his life, and she thought that Carl could benefit from her testimony. She told him about how her faith had made a difference in her life and asked Carl if he would like some literature, as well as a visit from the pastor of her church. “You need God during this time in your life, Carl. Don’t wait any longer.”
“I can’t believe you are saying this to me,” Carl stated. “What gives you this right?”
He demanded that another nurse be assigned to his case, and indicated that he would be sending a letter to his physician and the director of the hospital.
What’s going on with the healthcare professional
Religious faith can be a source of comfort during a difficult time, and Nicole has benefited from her own faith in ways that the feels would also benefit Carl. As a caring professional, it feels to Nicole like the right thing to do to share her faith with someone who seems to be in need, like Carl. Furthermore, it is quite possible that, in Nicole’s religious training, it is the responsibility of the faithful to reach out when the opportunity arises. From the perspective of her denomination, Nicole was fulfilling her obligation. From Carl’s perspective, and quite possibly the organization who employs Nicole, ethical and professional boundaries were crossed.
While Nicole’s intentions were not to create harm, she indeed created harm, and may as a result be reprimanded. This situation could have been avoided by:
- Avoiding discussions of spirituality and religion unless the patient has indicated an interest first.
- Suggesting spiritual resources along with other resources, such as mental health, and allowing the patient to indicate an interest.
- Careful adherence to the guidelines established by the office or clinic to avoid ethical violations.
The following are suggestions of how to handle situations when the newly-diagnosed patient appears to be in need of spiritual assistance:
What not to say
- “You need some spiritual direction in your life. I can help.”
- “It is going to be easier for you to get through this if you have faith in God.”
- “I would be happy to arrange for you to receive spiritual guidance.”
What to say
- “Is there any kind of support you need right now? We have some resources that we keep on file here that I can recommend to you.”
- “We have resources for mental health and spiritual counseling. Would any of this be helpful to you right now?”
- “Newly-diagnosed patients can benefit from spiritual beliefs and practices as they deal with the news of their condition and start moving forward with treatment. Is this something you would like me to help connect you with?”
Keep in Mind: In an ideal situation, how would you hope that your own spiritual or religious beliefs could play a role when talking about spirituality with a patient? It is a human nature to want to share something personal meaningful with someone in need. Would sharing your beliefs present any potential ethical concerns?
Discounting Spirituality
Sara, a medical assistant, describes herself as a ‘rational person who sees life as it is, without trying to pretend that there is some kind of deeper meaning or higher power behind it.” Sara thinks that newly-diagnosed patients should be focused on facing the reality of their diagnosis and working with their healthcare professionals to make informed decisions and comply with treatment recommendations. In her experience, this is the best way for patients to get better, and she encourages patients to take this approach to their healthcare and not assume that they are going to ‘cured by positive thinking and prayer,’ which Sara views as potentially interfering with treatment.
Her patient, Carolina, remarks that she is looking for a prayer group to help support her as she begins her treatment. “Do you have any suggestions for how I might find a good prayer group?” Carolina asks.
“I would really encourage you to focus on doing what you need to do medically to get bet back on your feet,” Sara answers. “You have a great healthcare team in place, you’re going to be receiving state of the art treatment, and we have a solid plan of aftercare in place. It doesn’t get any better than what you have right here.”
“I think prayer would also help me to get through this,” Carolina says. “I wasn’t asking you to pray, but to see if you had any suggestions.”
What’s going on with the healthcare professional
Just as spiritual belief is deeply personal, so is spiritual disbelief. Individuals who take a purely rational approach toward life are deeply committed to this viewpoint, and may be convinced that those who seek spirituality are misguided. As a healthcare professional, Sara thought that her patient, Carolina, would be better off focusing her time and energy on what she could gain through modern medicine and not be distracted, and possibly disappointed by, beliefs that were not grounded in science. In her desire to encourage Carolina to stay realistic and focused, she implied a disrespect for Carolina’s beliefs and may have offended her.
Sara could have accommodated Carolina’s beliefs and her own by:
- Accepting that Carolina has spiritual beliefs that she does not share
- Acknowledging Carolina’s beliefs without attempting to impose own
- Offering Carolina any available resources or indicating that she does not have the resources to help
Suggestions for handling this situation include:
What not to say
- “I don’t believe in any kind of religion. I don’t think it has any value.”
- “Medical science has everything you need to get you feeling better.”
- “You can trust your healthcare team to get you through this.”
- “We’re healthcare professionals here and this is where we all need to be focused.”
What to say
- “I don’t know a lot about prayer groups and we don’t really have any resources like that on file here. I’m sorry I can’t help you.”
- “One of the nurses here may have some ideas for you. I will introduce you to him.”
- “You might do some online searching to find a local group. I can give you a couple of ideas about how to get started.”
- “Patients sometimes tell me that prayer can be helpful during difficult times like this.”
Figure 10-__
A photo of a healthcare professional in deep conversation with a healthcare professional, or a photo of praying hands.
Providing a Listening Ear
Franco works in the physical therapy department of a rehabilitation facility that serves primarily patients who have had surgery. He often engages his patients in conversation when he is working with them; this helps to keep their mind off the pain and discomfort that is often part of their treatment, and he finds that they often want someone to talk to. Spirituality is often a topic that his patients bring up in these conversations. Franco has strong spiritual beliefs of his own though he knows that his beliefs are very different from the patients he works with.
One of his patients, Christopher, is recovering from an automobile accident that almost resulted in his death, and is requiring an extensive recovery period. During this time, Christopher has become very involved in his religion, which he often shares with Franco during their treatment sessions together. Franco has very different beliefs, but doesn’t feel that it is his place to share them with Christopher, nor does he want to discourage Christopher from talking.
“My faith has really made a difference in my life,” Christopher tells Franco. “I am striving to get closer and closer to God while I am here. I would wish the same thing in your life, my friend.”
“I can see how important your faith is to you,” Franco answers. “Maybe you can tell me more about how your faith is helping you to get through your recovery.”
What’s going on with the healthcare professional
Franco is secure in his own religious faith and doesn’t need or, most likely, want to be introduced to Christopher’s beliefs. But he also understand that Christopher’s faith has been a major factor in helping him to recover from a traumatic accident, and that his faith is also helping Christopher to remain compliant with a long and difficult recovery process. As such, he sees that Christopher’s faith has value, and wants Christopher to feel comfortable and accepted when he chooses to discuss it. In this regard, Franco has chosen to be a ‘listening ear’ for Christopher, and to encourage him to do whatever he can to have an optimistic and determined attitude during his recovery. If Christopher’s new-found religious faith is supporting him in his recovery then, in Franco’s mind, then this is an important aspect of his treatment. Franco also knows that, by acknowledging and respect Christopher’s religious beliefs, he is enhancing patient/professional trust.
Franco is basing his approach to Christopher based on:
- Acceptance that Christopher has chosen his own spiritual path
- Belief that there are multiple spiritual paths available and that, what is important, is that Christopher is benefitting from his chosen path
- A desire to listen to Christopher in a non-judgmental, supportive manner
Suggestions for being a listening ear in a spiritual sense include:
What not to say
- “Are you sure it’s a good idea to be so involved in all of this religion?”
- “I think what has really gotten you this far is your hard work and the excellent care you have had.”
- “Let’s talk about your exercise right now. Maybe we’ll have time to talk about religion some other time.”
What to say
- “I’m glad your faith is helping you to get through this process.”
- “Tell me some more about how you rely on God during this time.”
- “Sounds like your spirituality is really helping you to face the challenges of recovering from your accident.”
- “I know physical therapy can be painful at times. How does your faith help you during the rough spots?”
Educational Moment: The Value of Compassion
Practicing compassion for oneself and others can help newly-diagnosed patients to feel a sense of acceptance and peacefulness. When patients criticize themselves, remind them that, just as they would be patient and loving with someone else facing life’s challenges, they can also show these qualities to themselves.
Keep in Mind: How do you experience spirituality in your own life? If you take the time to think about this question, you might discover that an average day is filled with opportunities to have a sense of the spiritual.
How Patients can Experience Spirituality
Newly-diagnosed patients who are seeking – or at least open to – some form of spiritual expression can benefit from suggestions from their healthcare professionals. Spirituality can be experience through organized religious services, but it can also be expressed in many other ways. While larger urban areas offer more diverse opportunities, experiencing spirituality can be pursued on an individual basis, depending on the interests and abilities of the individual.
Some suggestions include the following:
Figure 10-__
Illustrations of the activities described in the subheads below.
Worship
Services at a church, synagogue, or other religious meeting place offer opportunities for worship in a more formal setting. Individuals who were reared to attend religious services may find this is the approach that they are most comfortable with. Radio, television, and Internet broadcasts of religious services are also widely available.
Inspiration
Inspirational messages may or may not be based on a specific religious denomination. There is a wide range of inspirational books, as well as radio/TV/Internet broadcasts and Websites that have an inspirational but not religious approach. Newly-diagnosed patients can be positively impacted from reading or hearing the stories of individuals who have dealt with a healthcare crisis, for example, as well as positive thinking and empowerment messages.
Social Interaction
The act of spending time with caring people, sharing hopes and fears, can provide a means of feeling part supported and connected to something greater than day-to-day experiences. Social support is available by communicating with other patients, both in person and through online health and spiritual communities, as well as with family members and friends.
Giving Back
Newly-diagnosed patients can benefit from giving back to their community in some way, through tutoring children, for example. When volunteering, the focus moves away from the self – needs, frustrations, disappointments – toward helping someone else faced with life’s challenges. Volunteer work can be a great way to find a new sense of meaning in life.
Stress Reduction
Practices like meditation, yoga, creative visualization, journaling, and others in the mind/body/spirit have been proven to help patients to reduce their stress levels, and have also been proven to promote wellness. The work of Jon Kabot-Zinn is especially relevant in terms of offering evidence of how these practices can enhance health and spiritual well-being. He is a pioneer in using mindfulness meditation with patients coping with illness and pain, and founded the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School. (REFERENCE)
Activities
Physical activity, which can include more vigorous activity but also simply taking walks, promotes wellness and empowerment. For example, taking a walk in nature can be a spiritual experience, as can taking a drive in the country, or going fishing, or skiing.
SIDEBAR: BODY LANGUAGE
Newly-diagnosed patients struggling with spiritual issues may reflect this struggle in their body language, including:
- A frown or a confused expression
- Slumped forward, looking down toward the floor
- Direct eye contact, as if the patient is looking for an answer
- Holding out hands in an open position, as if grasping for something
- Arms cross as a sign of self-protection
SIDEBAR: SELF-TALK
Spiritual confusion can be reinforced in self-talk that includes:
God has turned His back on me.
If I can’t be the way I have always been, then I don’t have any purpose in life.
There is never going to be any peace in my life.
I must have done something terrible to deserve this.
I have so much I have to get done, there is never going to be enough time.
Antidotes to negative self-talk around spirituality include:
I can look to the teachings of my faith to help me to face my illness.
I am still a worthy human being and can make a contribution to the world around me.
I am facing a struggle now but I will find peace again in my life.
I have no control over this diagnosis but I can find the strength to deal with it.
I can be patient with myself and have more to accomplish in life.
SIDEBAR: EDUCATIONAL MOMENT
Questions of purpose and meaning often arise with newly-diagnosed patients and, in their conversations with healthcare professionals, they may make comments such as “I don’t understand why God is allowing this to happen to me,” or “I wonder what I am supposed to learn from this.” These comments can provide an opportunity to remind patients that it is normal to have spiritual questions, or to suggest that they may want to consider talking to someone with a clergyperson, if that have a spiritual or religious background.
Note: When Despair Leads to Depression
A spiritual crisis can lead to feelings of despair and helplessness that may become overwhelming for patients, resulting in depression. Consequently, healthcare professionals are advised to evaluate patients in spiritual crisis for symptoms of depression, and to be ready to make referrals to mental health professionals as needed. Guidelines for evaluating depression were presented in Chapter Three.
Rx: Discussing Spirituality with Patients
Martina, the patient newly-diagnosed with kidney disease at the beginning of the chapter, was experiencing a spiritual crisis and questioning if her life was going to have any meaning beyond illness. Her dialysis technician, Judy, wanted to act as a sounding board and give her an opportunity to talk about her spiritual concerns. Judy wanted Martina to feel like she could at least voice her spiritual issues and, based on her training, also direct Martina toward spiritual resources available at the hospital. As she sat with Marina, they talked.
Judy: Martina, I know your diagnosis has really knocked the wind out of you. Patients that I work with go through the same thing when they first receive their diagnosis.
Martina: Yes, that about describes it. And turned inside out to the mix and you have pretty much said it all.
Judy: And from what you said, you’re not so sure what the meaning of your life is right now. It all seems kind of hopeless to you.
Martina: That is the way I feel. Whoever’s in charge isn’t paying much attention to me right now. Maybe nobody’s in charge.
Judy: Martina, it sounds to me like you have concerns that are more spiritual. I can’t give you spiritual advice. But I’m a good listener and I might be able to recommend a couple of resources we have her at the hospital that might be useful. Would any of that help you?
Martina: Sure. No one else wants to listen to me. Right now, my family is so upset by my situation, seeing me so sick and then knowing that I am going to have to go on dialysis, they are handling about as much as I can. When I start to talk about my disappointment and how helpless I feel, they run for the hills.
Judy: This is hard for families. They are dealing with their own fears, and sometimes they avoid talking about the hard stuff with their loved one. Families often wish the patient could just take things in stride and get better.
Martina: I can accept that. But I feel like I need something more than what I can get from other people, anyway.
Judy: Do you have any religious affiliation?
Martina: They asked me the same question in the Admissions office. I said I hadn’t stepped inside a church in years. I really don’t think that’s what I need right now.
Judy: What do you need?
Martina: What I need is peace of mind. I want to know that there is something more to life than feeling sick and having to get all of this medical treatment, that life has some kind of meaning. If this is all there is to life, then it seems kind of futile to me. Why bother to get better?
Judy: In my job, I talk to a lot of patients who feel a lot like you do. I’ve seen some of them adopt spiritual practices that really helped them. Are you interested in knowing what they did?
Martina: Sure.
Judy: Some got involved in practices like yoga and meditation, which helped them feel more calm inside. Others found some inspirational books that helped them get a perspective on their lives. I worked with a patient who just started taking walks in nature, and felt like these walks gave her a new outlook on life. And I have also seen patients benefit greatly from talking with a clergy person.
Martina: These are some good ideas, Judy.
Judy: We have a pastoral counselor on staff if you want to talk to her. And we offer all kinds of classes in the Wellness Center. And if you are really feeling low, you might also talk to the nurses about referring you to a mental health professional.
Martina: I will give this all some thought.
Judy: I would just like to add, as you know, human beings have an emotional side and a physical side, and they also have a spiritual side. As much as possible, we always encourage our patients to focus on being the best person they can be, from all angles. This contributes to your wellness, and helps us all work together better.
Guidelines for Assisting Newly-Diagnosed Patients from a Spiritual Perspective
Here are guidelines to consider when discussing issues of a spiritual nature with patients:
FIGURE 10-__
A patient surrounded by building blocks, or a set of stairsteps, labeled: Normalize, Clarify, Don’t Judge, Share, Refer.
Normalize the desire for a spiritual connection.
Newly-diagnosed patients often feel like their experiences are unique, that they are the only people in the world who have ever felt the way they feel. As a result, they may also feel that they shouldn’t be having their reactions. Spiritual concerns can be especially difficult for newly-diagnosed patients to express because they may feel that, if they are questioning the existence of God and/or feeling hopeless, they may be in some way displeasing God which might result in further difficulties coming their way. Also, they may be hesitant to admit that they are not only physically but spiritually challenged to protect their own self-esteem.
Healthcare professionals can help patients who have spiritual concerns by first reassuring them that it is normalize to feel this way after being diagnosed with a medical condition. Judy began the conversation with Martina by telling her that she has come into contact with other patients who have had similar reactions.
Clarify boundaries and offer to be a listening ear.
Unless the healthcare professional is specifically qualified to offer spiritual counseling, it is recommended that the intended purpose of the discussion be clarified before it begins. This way, the patient is not confused or disappointed when the healthcare provider is not able to offer advice. Institutional guidelines also dictate the role that the healthcare provider can play in discussing spirituality. Judy informed Martina that, while she was not able to give spiritual advice, she was willing to provide a listening ear if Martina wanted to talk about her spiritual issues.
Avoid judging the patient.
Judy had her own religious beliefs based on her long association with her denomination. Possibly, she would liked to have explained her beliefs to Martina and invited her to learn more and, potentially, attend a worship service with her. Furthermore, Judy may have been feeling that Martina was moving in the wrong direction spiritually, and should not be questioning the existence of a Higher Power. If Judy was having these thoughts, she was careful not to convey them to Martina. Instead, she maintained an attitude of listening without judgment. This in turn made it easier for Martina to be honest about what was on her mind because she knew that Judy was open to whatever she had to say.
Share the experiences of other patients.
Newly-diagnosed patients in spiritual crisis feel alone in this struggle. Being told about the experiences of other patients with similar struggles can help them to feel less alone, and also help to further normalize their feelings. Furthermore, while healthcare professionals cannot generally make direct recommendations, sharing the experiences of other patients provides an opportunity to suggest ideas for spiritual connection and growth. Judy was able to offer Martina various suggestions, based on what she had witnessed other patients do.
Offer referral sources.
While not able to assist directly, Judy was aware of referral sources within the institution she worked for, including a pastoral counselor and the Wellness Center. Martina was left not only with ideas, but a place to get started, if and when she is ready to move forward. Judy had taken note of Martina’s general sadness, and also suggested the option of using the services of a mental health professional.
Connect spirituality with general wellness.
While it is always advisable to be cautious about being too direct or ‘pushy’ with patients, it can be helpful to gently provide them with the benefits of taking steps to enhance their own wellness. Judy had been trained that newly-diagnosed patients who are able to face their diagnosis and treatment with calmness and acceptance are better patients in terms of following treatment recommendations and staying motivated, even when facing challenges that may arise along the way, such as side effects or other set-backs. To this end, she closed her conversation with Judy by making this point.
Summary
A medical diagnosis can result in doubts and questions of a spiritual nature, including existence of a Higher Power, the meaning of life, and making a contribution to the world. When patients are in spiritual crisis, the healthcare professional can serve as a listening ear as well as refer them to resources that might be useful in resolving these issues. Involvement in spiritual practices can result in stress reduction, increased motivation to be compliant, and enhance communications.