Opening Case Study
Rosalie and her husband, Bob, had their dream vacation all planned. They had been saving for a cruise to Alaska, which would begin with a flight to Seattle, where their cruise would leave from. This was their first cruise, but they were hoping to take more, as well as do other traveling, when they retired in ten years. Bob often joked that, when they finally retired, they would spend their time visiting their children who, by then, would be spread throughout the country.
Their vision for the future changed when Rosalie was given the news by her physician that, due to her pulmonary hypertension, it was not safe for her to fly for the foreseeable future, at least until her physician was certain that her medication regimen was effective and the condition was stabilized. Bob was with her during the talk with the physician. True to form, Bob attempted to be as upbeat as possible, and said that this would be an excuse for him to buy an SUV and a camper, or that they could use the train system. “After all,” he said, “we won’t be in a hurry anyway.”
Keep in Mind: Newly-diagnosed patients may feel as if their plans for the future are completely out of their reach. How would a medical diagnosis potentially impact the vision that you have for your future?
Rosalie attempted to stay upbeat, for Bob. But when she was alone with Sammy, one of the medical assistants at the clinic, her attitude was not so positive.
“I feel like my future is suddenly up for grabs. I have no idea what to expect.”
She told Sammy about how she and her husband had planned for years to take the cruise to Alaska. Rosalie and Bob had been active in exploring nature, and wanted to visit as many different parts of the world as possible. The trip to Alaska was only going to be the beginning.
Rosalie worried about how Bob would be affected by her diagnosis. He had been counting on her to be his partners on these adventures. They had done extensive research on places to visit, and had learned about relatively low cost ways to travel. The two of them had even made a list of places to visit and had started to think in terms of a plan. They thought that they would spend their 30th wedding anniversary in the Amazon rain forest.
While Rosalie had a long term history of high blood pressure – her mother had also suffered from it – she hadn’t realized it had worsened until she began to have some of the same symptoms her mother had experienced. The diagnosis confirmed her worst fears.
Keep in Mind: A patient who is distraught about the future is most likely overwhelmed by their sense of helplessness. Would you feel comfortable offering to listen to a patient who is may feel that he/she has no future?
“This is a big disappointment to you, Rosalie. I know this is difficult,” Sammy said. “Do you want to talk about it after I finish with your lab work?”
“I’m not sure what there is to say at this point,” Rosalie answered. “I think the doctor has already said it all. There’s not much to look forward to at this point.”
Sammy knew that Rosalie was going to need to be motivated to stay healthy if she was going to stay on top of her condition. This would mean watching her diet, maintaining a moderate activity level, and being consistently compliant with her medication regimen. The healthcare team would also need to be able to depend on Rosalie to monitor herself and report any concerns that arose. Sammy also knew that if Rosalie continued to have a defeated attitude about the future, she would be less likely to see a reason to be actively involved in her own health.
“Can I talk to you about a few things?” Sammy asked.
Keep in Mind: How would you prepare yourself to sit with a patient feeling fearful and helpless about the future? Depending on the diagnosis, the patient’s future might be dramatically different from what he/she had planned. How would you most want to do for the patient in this discussion? What would you want to avoid?
Introduction
“My future has been taken away from me.”
Newly-diagnosed patients have many questions about their future, which have been discussed in previous chapters. They worry about their treatment and how they will be affected by it. They fear that they will have to make changes in their daily lives that will make them seem less normal to themselves and others. They are unsure how personal relationships will be affected. In Chapter Ten, the spiritual crisis that newly-diagnosed patients may experience was described; questions about the meaning of life include questions about future destiny, during life and beyond.
In this chapter, the patient’s vision of the future is discussed from a more practical perspective. It is human nature to have a vision regarding how the future is expected to unfold, including success, relationships, activities, contribution to others and to the world. As a result of a medical diagnosis, the expectations for the future – the vision – may suddenly feel uncertain. Patients naturally think of their diagnosis as placing limitations on the future. They question how their diagnosis, and its treatment, will limit what they can do and, therefore, the choices that they will be able to make about the future. Their assumptions about the future may give way to an overwhelming sense of helplessness and loss.
When newly-diagnosed patients feel that they don’t have a future, they may not be motivated to be compliant which, in turn, affects the ability of healthcare professionals to provide the best care. Healthcare professionals can help patients by encouraging them to have accurate information about their condition and how it may affect their future and, based on this information, to consider realistic alternatives.
A Medical Diagnosis and the Vision for the Future
The effect that a medical diagnosis has on a newly-diagnosed patient’s vision for the future really begins and ends with the patient. Their reaction to the diagnosis and their perceptions of how it might affect the future, as well as the condition itself, all play a role. Some individuals are more able to deal with change, and personal-set-backs, than are others. The diagnosis itself, in terms of whether it is chronic, acute, or catastrophic, the length and severity of treatment, and the expectations regarding how it will impact normalcy, are all factors that will affect how the patient views the diagnosis in terms of the future.
Hopes, Dreams… Assumptions
Every human being has a vision for their own future, even if they might not think of it as a vision, and even if the vision is not so positive. Some people have expectations of a future that mighty include success and prosperity, and a happy home life surrounded by friends and family. It is human nature to assume that this is all possible, and that doing all of the ‘right’ things to make these dreams become reality is all that is required. Most people don’t view their own futures in such idealistic terms; instead, they have a vision of the future that is optimistic but also realistic, and reflects the belief that they will be able to continue on with their current activities, job or career, and relationships with family and friends. Basically, one’s vision of the future is based on an assumption that life will go on as it has been, that changes will be minor and, if they do occur, that we are for the most part in of control of the future.
Figure 12-__
A photo or illustration of a patient standing with a compass or roadmap.
A Crisis of Meaning, and Practical Questions
Newly-diagnosed patients often describe their assumptions about the future as being just that: assumptions. They realize that their futures are not going to be exactly as they had planned. As discussed in Chapter Ten, which was focused on meaning and spirituality, a medical diagnosis can suddenly introduce the idea that the future may not necessarily unfold as we expected it to, and that life is uncertain. Consequently, newly-diagnosed patients question what their future will be like, how it will change and, in some cases, whether they will have a future at all. From a spiritual perspective, these questions will often result in a spiritual crisis, a crisis of meaning.
From a practical perspective, newly-diagnosed patients will also need to reassess their vision of the future. Medication regimens, lifestyle management changes and, possibly, the progression of their condition may require that hopes and plans be modified to accommodate the diagnosis. Consequently, the questions about the meaning in life are coupled with these practical questions. Healthcare professionals may find themselves in the position of helping patients to address both kinds of questions.
Focusing on the ‘Nuts and Bolts’ of the Future
Healthcare professionals can help newly-diagnosed patients consider their vision of the future by focusing on the ways in which their diagnosis may or may not affect daily life, in the near future and, potentially, in the long term. These practical, medical considerations – the ‘nuts and bolts’ of the future –will help to determine what aspects of patients’ vision for the future will remain in place, and what aspects will need to be revised. By focusing on the practical issues, healthcare professionals can encourage patients to consider the future with an informed, and realistic, yet optimistic, attitude.
Keep in Mind: Healthcare professionals can help newly-diagnosed patients by focusing on practical considerations. What are some of the practical concerns that a patient would want to have answered during the process of redefining their vision of the future?
Helping Patients to Cope with Uncertainty About the Future
When newly-diagnosed patients are feeling that their vision of the future is changing for the worst, or feeling that they have no future at all, they may express these concerns directly. More likely, a bleak attitude regarding the future will be expressed through body language such as a looking downward with a slumped posture, or covering their face with their hands. Healthcare professionals can help patients to turn this thinking around by recognizing signs that that the patient is feeling this way and offering support and alternative viewpoints.
Figure 12-__
An illustration showing a patient surrounded by clouds labeled with the subheadings from this section, including Fear, Hopelessness, Either/Or Thinking. A healthcare professional could be depicting with a tray containing Support, Information, Role Models, Resources.
Confronting the Fear Factor
Jayden’s Story
When Jayden received his diagnosis of non-Hodgkins lymphoma, he was overcome by fears regarding his treatment, the effects on his family, and what this would mean for his future. He owned a small business, which he was still in the process of establishing, and had dreams of growing it into a much larger company that would provide a secure future for his family. While his healthcare team was able to help him to cope with his treatment, and his family showed that they could work together to keep his business going while he was being treated, Jayden’s fears made him have doubts about what he might expect in the future.
“It scared me so much to find out that I was sick. All I could think about was how afraid I was. I had so many plans for the future. But after my diagnosis, the future seemed to fade into a big patch of darkness. I was so scared I couldn’t bring myself to think about what might still be possible and what might be different. It seemed like I wouldn’t have anything I wanted.”
Intervening with the Fear Factor
Patients may think that they should not be fearful, and should face their diagnosis with optimism, and take charge of the future in spite of their fear. Or, they may give into their fear to the extent that they assume that the best they can do is to admit defeat and not resist their fate. Healthcare professionals can’t promise newly-diagnosed patients that their futures will or won’t be changed by their diagnosis. But they can help by identifying the patient’s fear about their diagnosis, normalizing their fear response, and providing some education.
“Jayden, I know your diagnosis is totally unexpected, and something you never thought would happen. It’s normal to feel scared, and it’s also normal to fear that your future is not going to be anything like you planned. Newly-diagnosed patients often have the same fears about the future. But I can tell you from experience that, as they begin to deal with their diagnosis day to day, and get informed, they also gain a better understanding of what their condition will mean for the future. The unknown is also scary. Knowledge is power, and can take some of the fear away.”
Identifying the Effects of Hopelessness
Isabella’s Story
Isabella wouldn’t be able to explain why, or when, she came to the conclusion that she had, in her words, ‘very little future.’ It wasn’t when she first received her diagnosis of a tumor in her nasal system. At that point in time, she was so unfamiliar with her diagnosis that had no idea how it might affect her life. More likely, her perception of her future changed when she learned that the extensive surgery she would need to undergo would cause changes in her appearance. Isabella had hoped for a future that would include a husband and children but now, with a future ahead of her that would include noticeable facial disfiguration, she felt like it was useless to even try to find a life partner.
“All of my plans revolved around building a nice life for myself, which would include a career and a family. I was dating and, I felt, meeting guys who might in the future be good husbands. Might in the future. Or might not, at this point. It seems like trying to find a man who would want to marry someone who doesn’t look normal, and who clearly has had health problems, is an impossible dream. Who would want to take on all of those problems? It all seems hopeless right now.”
Intervening with Hopelessness
Isabella sees herself as being unattractive after her surgery is complete, and has decided that, consequently, she will not be able to find someone to build a home and family with her. As with the fear factor, newly-diagnosed patients facing their own belief that planning for a future is a hopeless cause can benefit from acknowledgement of their sense of hopelessness, normalizing these feelings, and offering suggestions and information. It can be helpful to remind patients feeling hopeless about the future that other newly-diagnosed patients feel the same way.
“Isabella, I can understand why the future may look hopeless to you right now. It’s normal to wonder how people are going to react to any changes in your appearance after the surgery, and think that it’s going to be impossible to find a man who wants to be with you. Other newly-diagnosed patients in your situation have felt the same way. But I would encourage you to stay open-minded about the future and not to assume the worst. Let’s take this one day at a time.”
Explaining the Affect of Either/Or Thinking
Barbara’s Story
Barbara had intended to leave the business world in her fifties and go back to college to get a degree in social work. She wanted to do something that would provide her with an opportunity to contribute to her community in a new way. However, a few months before she was planning to begin her studies, she received an unexpected medical diagnosis of ovarian cancer. Her physician recommended that she consider staying in her current job for the near future, which provided excellent health benefits and would allow her to go on disability during her lengthy recovery time. Her physician frankly told Barbara that she didn’t think she would have the energy to undertake a return to college or to begin a new career in the near future. Barbara reacted with sadness and frustration, and felt like future had been taken away from her.
“I have been ready to move on to my new career for the last few years and was waiting until I had fully vested in my pension plan and had saved enough money to go to school full time. I was preparing to close this chapter in my life and move forward into achieving what I really wanted at this point in my life. My whole future was about being a social worker and helping people. Now I feel like this has all been taken away. I can hang onto a career that I have outgrown for as long as I can physically and emotionally stand to, or I can go on disability. That is not a future.”
Intervening with Either/Or Thinking
As implied in the discussion of fear and helplessness, newly-diagnosed patients often regard the future in terms of either-or thinking, focusing on one extreme of the other without considering that there may be a middle ground in between, with other possibilities. For example, as in Barbara’s case, they may assume that if they can’t pursue the career they had intended to pursue, they won’t achieve any success at all, rather than considering that they may have other career options available to them that they can pursue in spite of any limitations that their medical condition presents. It is human nature to approach a crisis with either-or thinking, especially when undergoing emotional stress and being uninformed as to the alternative solutions.
Healthcare professionals can help by first pointing out the either-or thinking to the patient, and suggesting that he/she might consider alternate possibilities, and offering to take a moment and consider some of these possibilities. As always, normalizing the patient’s feelings is also important.
“Barbara, I know your diagnosis is a shock to you and it feels like your future has now become out of reach. I have talked to other newly-diagnosed patients who felt the same way. From what you told me about your plans, it sounds like you were hoping to reach out to people in need in your community. Would you like to brainstorm on some other ways to do that while you see how your recovery is going? Taking some time to talk this through with someone might help you to discover that you have some other options.”
Figure 12-__
A photo of a patient having a conversation with a healthcare professional, holding a patient’s arm or hand in a caring way.
Emphasizing the Importance of Accurate Information
Adam’s Story
When Adam received his diagnosis of liver disease, a nurse practitioner, Mark, talked to him about his treatment and how his life might be affected in the future. Mark also gave Adam some information to read. But Adam thought he knew all he needed to know because he had recently seen a TV documentary about someone with the same condition. While he didn’t remember all of the details, he did remember that the man featured in the documentary did not have a good prognosis. In fact, his health had declined rapidly in spite of the treatment he received. Adam didn’t tell the doctor that he had seen this program, but it was on his mind during the days that followed. He glanced through the information the doctor had given him, but hadn’t read it very closely.
“I knew all I needed to know. I had watched a man about my age in this documentary who had received the same diagnosis. They showed what his life was like after his diagnosis, and I can tell you he didn’t have much of a future at all. He went downhill so fast, you wouldn’t believe it. I remembered his story and I decided that maybe the best thing for me to do was to just give up so I wouldn’t be disappointed.”
Intervening When Information may be Incomplete or Inaccurate
As discussed in Chapter Seven, newly-diagnosed patients are often so overwhelmed emotionally by their diagnosis that they have difficulty processing information. Consequently, they may have virtually no understanding of their diagnosis or, like Adam, they may have been exposed to information that is incomplete or biased in some way, and react accordingly. When not in possession of all of the facts, it is human nature to ‘complete the story’ with assumptions and worst case scenarios. The stories that newly-diagnosed patients create around their diagnoses will often extend into the future, resulting in a distorted vision of what might lie ahead.
It can be helpful for healthcare professionals to help newly-diagnosed patients to increase their information. This begins with understanding what patients currently know, or think they know, and how they received this information. Respond to the patient’s current assumptions by offering to ‘fill in the gaps,’ or suggest that the physician or other members of the treatment team might offer additional perspectives.
“Adam, I know you saw a documentary about someone with your condition and that made you feel like your future was pretty bleak. But can I offer an additional perspective? You saw one patient’s story, but you were not necessarily shown what every patient experiences. There are a lot of factors involved in how one patient is affected by a medical condition versus how another patient experiences it.
Recognizing the Value of Support
Eden’s Story
Eden’s diagnosis completely changed her future. Plans for working overseas, and the social and career opportunities that would follow, would have to be put aside so that she could be close to the medical center where she was being treated for heart disease. Eden’s physician had advised her to remain in the area for at least the enxt year, and possibly beyond, so that her condition could be closely monitored. Even if her situation improved, Eden doubted that a similar opportunity would be available again or, if it was, whether she would feel strong enough to accept it. Eden felt like her future had been taken away from her.
“I looked around my hospital room and I said to myself, ‘you’re going to be spending a lot of time in rooms like this, trying to stay ahead of this medical condition that has already taken your future away.’ I felt like I was at square one in my life, with no place to go but further down. And it seemed like I was left alone to face all of this.”
Intervening When Patients are Isolating themselves
Newly-diagnosed patients like Eden can benefit from knowing that they have a support system that they can rely upon to help them to face the future. While realistically she may not be able to pursue her future plans as she had imagined them before her diagnosis, knowing that she has a caring support behind her can help her to gain some perspective on the life ahead of her.
Healthcare professionals can encourage patients to open themselves up to the possibility of support, beginning with reminding them of the value of being supported as they adjust to their diagnosis and begin to think about the future, and helping them to recognize the individuals in their lives who can travel this journey with them, as well as recommend additional support resources.
“Eden, I know this is setback for you. The future doesn’t look at all like it did before your diagnosis. But you’re not alone. You have people in your life who want to be there for you while you go through your treatment, and who will stand by you as you face the future. Can you think of yourself as someone with a future that includes a lot of people who care about you?”
Keep in Mind: Patients who are currently on the treatment path, or who have completed it, can be helpful to newly-diagnosed patients who are struggling with what to expect in their own futures. Ideally, what is the most helpful message that a newly-diagnosed patient can learn from an experienced patient?
Introducing Role Models
Enzo’s Story
Enzo couldn’t imagine how he could face the rest of his life. His treatment for a serious bowel inflammation was going to require extensive surgery, including a colostomy, followed by major changes in his daily life, whether he wanted to or not. The adjustments that his healthcare team had told him he would need to make were overwhelming. Not only would he need to limit his activities, and change his diet, but even the way he used the bathroom would have to change. He had never heard of anyone having to make the changes that were being asked of him or, if there were others, they were probably hiding their situation from others, just as he planned to.
“’How was a guy supposed to live like this?’ I asked myself. How would I be able to respect myself, and who else would respect me? I felt like I was either going to go into hiding to avoid being embarrassed, and if anybody found out about what I was dealing with, I would feel like some kind of a freak. I wanted to go to a desert island and stay there.”
Intervening with a Patient in Need of a Role Model
Newly-diagnosed patients are often fearful about how their diagnosis will affect their daily lives. While healthcare professionals can help them by providing objective information, and describing the experiences of other patients, this information, while helpful, may answer an intellectual need but not an emotional need. Patients may listen selectively, but not fully comprehend what they are hearing, and fill in any gaps with their own assumptions. Their assumptions may be overly optimistic but, just as likely, patients are focused on a worst case scenario. Enzo is an example of a newly-diagnosed patient who, as a result of a lack of experience with other patients with his condition, assumes that worst about his future.
Being exposed to patients who have the same condition, who are coping with their challenges and limitations, and moving forward with the future, can be invaluable for newly-diagnosed patients. In this manner, these individuals become role models for the newly-diagnosed patient. They can answer questions regarding their own experiences, talk honestly about the challenges, and provide their own perspective on the future. The closest these individuals are in age, diagnosis, and background to the patient, the more valuable the experience can be. Support groups often provide a speaker’s bureau or a ‘buddy system’ with current patients who are willing to reach out to newly-diagnosed patients.
“Enzo, we have other patients in the practice who are also being treated with your condition, and who might have a lot in common with you. Some of them meet in the office each Tuesday evening where I lead a support group. It might be helpful to meet a couple of them and learn about how they are coping with their condition. If you are interested, you would be welcome to join us. Of course, your confidentiality would be protected. Think about it and let me know.”
Referring to Outside Resources
Bree’s Story
Bree was initially upbeat after receiving her diagnosis. She was not looking forward to the treatment she would need to receive, but had assumed that the process would be similar to what she had been through with a friend when she was diagnoses. Certainly not something to look forward to, but not something she couldn’t handle. But after giving her some time to deal with the news, her physician sat down with her to talk about her specific condition and what she would face going forward. At that point, Bree realized that her situation was much different from her friend’s. Not only would her treatment be much more extensive, but her future was not certain. After this discussion, Bree felt like she had received a death sentence.
“I didn’t see how I was going to go on. In the blink of an eye, as they say, my future turned from hopeful to hopeless. Forget being around to see my grandchildren graduate from high school. I wasn’t sure if I was going to see my daughter complete the third grade. I told myself that I needed to put one foot in front of the other and do whatever I needed to do, but I wasn’t sure if I could even walk to my car and drive home. My vision of the future had turned from bright to dark and foggy.”
Intervening When Outside Resources are Needed
A newly-diagnosed patient like Bree may need more than encouragement and suggestions for looking at the future in another way. Like Bree, they may have such a dim view of their future that they are in need of professional support which might include a mental health professional. Otherwise, they may feel so hopeless about the future that they don’t follow through on treatment recommendations or are only halfheartedly compliant, or even become self-destructive in some way. Guidelines for recognizing depression and making a referral to a mental health professional were described in Chapter Three. It bears repeating in this chapter that healthcare professionals can play a critical role in recognizing extreme hopelessness in their patients and making appropriate referrals for support.
Bree might have benefited from a referral to mental health professional, with encouragement from the healthcare professional to follow through with the recommendation at her earliest convenience. She might also have been referred to a support center that was focused on her condition, if one existed, or support groups in her geographical area. Treatment centers and hospitals may offer additional support services for patients.
“Bree, I can see that you are really feeling discouraged about your future right now. I would like to talk to you about some resources that we are familiar with that offer counseling services. We have referred other patients to them, and the patients have reported back that they received the help they needed. I’d like to give you this information and encourage you to follow up. I’ll help you make the connection if you need me to. What do you think?”
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May want to consider some photos of body language positions here.
SIDEBAR: BODY LANGUAGE
Newly-diagnosed patients who are feeling uncertain or hopeless about the future may reflect this in their body language, including:
- A sad facial expression, or what seems to be a complete lack of emotion
- Staring at a spot on the wall or out a window, as if attempting to see into the future
- Crying, as if in grief
- A slumped, defeated posture, or a stiff, defiant posture
SIDEBAR: SELF-TALK
Negative self-talk about the vision for the future includes:
I have no future. I have nothing left to live for.
I had everything planned exactly as I wanted it to be and now it has all blown up in my face.
If I can’t give my loved ones what they need in the future, what good will I be?
I worked so hard to build for my future and it has been taken away from me.
I have no idea what’s going to happen to me.
Antidotes to negative self-talk about the future include:
The future is not going to be what I had envisioned but I still have a lot to live for.
What’s important is the people I love, and they are going to see this through with me, no matter what.
Life is an adventure, and I am going to see where my path will take me.
I’m determined to make the best of my situation and create the best future possible.
No one gets to say exactly what their future will be like. All I see ahead of me is possibilities.
SIDEBAR: EDUCATIONAL MOMENT: Embracing Grief and Change
A medical diagnosis is like a death in that plans and expectations for the future may, as the result of the diagnosis, may have to change or even become out of reach. As a result, patients may grieve the loss of the vision that they had for their future. The healthcare professional’s job may include helping patients to accept this loss, and encouraging them to consider what may be possible in the future. The goal is to change the focus from loss to possibilities.
Figure 12-__
Sammy and Rosalie discussing her future.
Rx: Discussing the Future with a Newly-Diagnosed Patient
Rosalie, the hypertension patient whose case was discussed at the beginning of the chapter, had learned from her physician that her condition would restrict her from traveling by air. Because she and her husband, Bob, had planned to travel extensively once they were retired, Rosalie felt that her future had been taken away from her by her medical condition. She talked with Sammy, one of the medical assistants, at her clinic.
Sammy: Rosalie, you look really upset about this. I remember you had been talking about your upcoming trip to Alaska.
Rosalie: You mean my formerly upcoming trip? I don’t know if I’m ever going to be able to leave town again, except to maybe drive an hour away or so, assuming that is not going to make me feel dizzy or send my blood pressure skyrocketing. Who knew my condition was this bad?
Sammy: What is your understanding of what the doctor told you about travel?
Rosalie: Basically, he told me that my condition is under control but that flying was a bad idea for the time being, if not always a bad idea. Right now, he wants to focus on keeping me stable. I understand that. The last thing I want it a stroke or a heart attack. But I didn’t know trying to stay healthy could be so boring. And look what’s doing to my husband, who wanted this as much as I did!
Sammy: It feels like your future is out of your control right now, and that you can’t do much about it.
Rosalie: Exactly. I had all of these plans. But as of today, I think maybe I don’t have any control at all.
Sammy: Well, it’s always scary not to be in control. But it sounds like you also realize that your doctor wants to keep you as healthy as possible, and that means managing your hypertension.
Rosalie: Oh yes, I know that. I watched what hypertension did to my mother’s health.
Sammy: Of course. But you know, Rosalie, I’m also hearing you say that if you aren’t going to be able to travel by air, you don’t have any future at all. Am I right?
Rosalie: Exactly. That’s what it feels like.
Sammy: I don’t know a lot about travel, but I’m wondering if there might be kind of a middle ground here, maybe some ways to do some traveling that don’t require air travel but that might still be fun. I’d be happy to brainstorm with you, just to get you started, if you think that might be helpful.
Rosalie: If you first idea is to walk, I’m going to have to say no. I mean, it’s a long walk to Alaska.
Sammy and Rosalie laugh.
Sammy: I can’t argue that. But to get the brainstorming started, I did want to remind you that you mentioned that your husband was considering driving or taking a train.
Rosalie: Yes, but that’s not what we planned and, to be honest, it doesn’t sound like much fun.
Sammy: I understand. Still, is it possible that you and your husband could do some investigating about car and train travel, and find some opportunities that might be fun?
Rosalie: I guess anything is possible.
Sammy: Great. If you want to toss around other ideas sometime, let me know. You might also want to see if your husband wants to do some strategizing with you. You know that expression, think outside of the box.
Rosalie: Not a bad idea, Sammy.
Sammy: And if you don’t mind, I have another idea.
Rosalie: Okay.
Sammy: We have a lot of patients being treated at the clinic who are also dealing with making lifestyle changes to accommodate their hypertension treatment. We have an informal support group that meets on Tuesday evenings. Would you be interested in checking it out sometime? You might pick up some useful ideas. One of the staff members also attends and can answer any questions that come up. You and your husband would both be welcome.
Rosalie: It might help to talk to a few other patients. I’ll ask Bob if he is interested.
Sammy: Well, I just want to congratulate you on taking action on your hypertension by coming in to see the doctor and getting your treatment underway. Not everybody is willing to do that because they don’t want to hear the bad news or find out that they have to make changes in their life. And as the doctor said, if you stay with the program, you will have a much better chance of staying healthy.
Rosalie: Don’t I know that!
Figure 12-__
As in previous chapters, an illustration of stair steps, labeled according to the subheads below, including Acknowledge helplessness, Identify either/or thinking, Present alternatives, Offer information, Connect compliance
Guidelines for Talking About the Future
Acknowledge the feelings of helplessness.
As the ‘elephant in the room’ that is often not discussed, helplessness is a major source of distress for newly-diagnosed patients. Helpless feelings can lead to a distorted view of the future. The patient may have the perception that the future is going to be so affected by the diagnosis that it will be recognizable, or even that he/she has no future at all. The healthcare professional may not be able to say anything that will help the patient to feel less helpless in the face of their medical diagnosis, nor is that necessarily the healthcare professional’s job. However, providing an environment in which the patient can admit to feeling helpless, and talk about their emotions, can help the patient to feel a sense of relief, as well a feeling of being normal. Often, patients’ families do not feel comfortable with this discussion, and are dealing with their own helplessness. Sammy began the conversation by acknowledging how out of control Rosalie was feeling.
Point out either/or thinking.
Sammy gently pointed out to Rosalie that she was assuming that if she was unable to fly, she would also be unable to travel with her husband. Since her vision of the future revolved around travel, she had concluded that she might not have a future at all. Healthcare professionals can offer this perspective to newly-diagnosed patients to help them understand how they may have an either-or view of their futures, with no middle ground. While patients may not accept this feedback, or be ready to look at their attitude about the future, helping them to recognize self-defeating attitudes can help them to become more open to expanding their vision of the future.
Invite the patient to consider alternatives.
Newly-diagnosed patients who are overwhelmed by fear and helplessness may not be open to considering alternative versions of their futures. If they feel that alternatives are being ‘pushed’ on them in any way, they may reject this discussion out of hand. However, inviting patients to consider alternatives, by asking them if they are interested in having this discussion, can be useful in two ways. First, inviting patients into this discussion may subtly introduce the possibility of reexamining the future and redefining it. Secondly, an invitation to discussing alternatives may influence them to actually begin this process, either with their healthcare professionals or others. In the case example, Sammy did not in any way demand that Rosalie consider alternatives. Instead, he suggested that there might be a middle ground and invited Rosalie to consider other possibilities, and offered to help her brainstorm. He basically planted the seed with Rosalie that she could still have a future, though in a different form than she had originally envisioned, if she was willing to ‘think outside of the box.”
Emphasize the value of staying informed.
A realistic vision of the future needs to be based on reliable and accurate information. By being informed, newly-diagnosed patients can create a vision that takes into account the day-to-day responsibilities and challenges of their medical condition, including any potential complications that may arise in the future. When patients are not completely informed, they ‘fill in the gaps’ with their own assumptions and fears. While accurate information can be scary for patients, they may also be encouraged when they understand how the condition may, and may not, affect their future. Knowledge is power. In the case example, Sammy encouraged Rosalie to attend a support group that would provide both accurate information as well as emotional support.
Connect the vision with compliance and wellness.
The connection between the healthcare professional and the newly-diagnosed patient’s vision of the future is compliance and wellness. In other words, the goal for discussion around the patient’s vision of the future is to promote a realistic and optimistic attitude regarding the future. For the healthcare professional, this attitude will help to assure that the patient is motivated to stay compliant with their treatment and any lifestyle adjustments that they have to make. Healthcare professionals can promote this connection by discussing a hopeful vision for the future in relation to compliance. In the case example, Sammy gently reminded Rosalie of the importance of taking care of herself and reinforced her behavior by complimenting her for taking charge of her healthcare, and reminded her that it was important to ‘stay with the program.’
Summary
Newly-diagnosed patients often react to their diagnosis by questioning their future. This is often the result of either/or thinking that leaves the patient feeling that, if their future is different from what they had envisioned, they have no future at all. What is of concern for healthcare professionals is that patients who don’t feel they have a future may also feel that it is futile to be compliant with medication regimens and lifestyle adjustments. However, healthcare professionals can help patients to gain a clearer understanding of how their diagnosis may affect day-to-day life, and encourage them to consider alternatives, with the goal of having a realistic, but optimistic, view of the future.