Opening Case Study
Logan had not been feeling well for a month or more, but had attempted to hide how he was feeling from his wife, Angela. She knew that something was wrong, but could not persuade Logan to see his physician. Finally, Logan experienced such excruciating back pain at his job that he was taken by the ambulance to the hospital. The emergency room physician suspected that Logan was seriously ill, admitted him to the hospital, and brought in an oncologist. Within a few days, Logan was diagnosed with lymphoma.
Keep in Mind: Family members feel a great deal of stress when a loved one is facing a medical diagnosis. What specific concerns would you expect a family member to have?
Angela had been by his side constantly since he had been brought into the emergency room. She was extremely distraught, and refused to leave his side beyond leaving to check on their two young children, who were staying with her parents.
Charlotte, an LPN who was assigned to care for Logan during the evening shift, often chatted with Angela when she came in to check his vital signs or to pass his medication. Angela was approximately Charlotte’s age and, as they learned during one conversation, they had a few acquaintances in common. Charlotte was concerned about Angela. She had a child of her own, and could identify with Angela’s fears about Logan, and the challenges of trying to watch over her children especially while their father was seriously ill. Charlotte couldn’t help but imagine what she would be going through if her own husband was facing a medical diagnosis.
During the second evening that Charlotte was on duty, Angela told Charlotte that she was not satisfied with the treatment that Logan was receiving at the hospital. She felt that the oncologist assigned to the case was not giving her enough information, and that conversations had occurred while she was home checking on her children. When she would ask Logan what he and the oncologist had discussed, she worried that Logan was not giving her all of the details. She also disagreed with the oncologist’s medication orders.
Keep in Mind: Family members may be feeling helpless. They want to help the patient and don’t know how to, and they are trying to cope with the additional responsibilities that they may be faced with. Helplessness can lead to stress, and may result in family members becoming overly critical of the patient’s healthcare.
“Let me give you an example,” Angela said to Charlotte. “I spent last night with the kids. When I came in this morning, Logan was still sound asleep. In fact he was snoring, he was sleeping so deeply. When he finally woke up, he told me that one of the nurses had awakened him during the night, and given him sleep medication. He’s only supposed to get that when he can’t sleep. So they knocked him out for no reason.”
“Gosh, Angela,” Charlotte said, thinking about how she would feel in Angela’s situation. “That doesn’t sound good at all.”
Charlotte knew that she probably shouldn’t have made that comment as soon as she said it.
“I’m glad you agree,” Angela said. “And so I know you won’t mind helping me with something. I want to persuade Logan to ask for another oncologist to handle his case. As usual, he is being stubborn. He insists that he likes his oncologist and he seems to know what he’s doing. But since you are a nurse, he might listen to you. Can you help me?”
“Angela,” Charlotte said. “I really can’t get involved in communications between you and your husband. This is between the two of you.”
Angela began crying. “I can’t handle this on my own. The doctor is on Logan’s side and I need the nurses to be on my side. And I am afraid we don’t have much time.”
Charlotte understood that Angela was extremely upset and not able to have a reasonable discussion at that moment.
“I’d like to bring in Betty, the nursing supervisor, to talk with you. Is that okay?”
“If you won’t help me, I guess you’ll have to,” Angela answered.
Angela was feeling that her only hope was to bring in a healthcare professional to help her to persuade her husband to consider changing oncologists, because her husband does not seem willing to listen to her. Charlotte, on the other hand, knows that this it would not be ethical to get involved in communications that need to occur between Angela and Logan, and is concerned that she has already overstepped her boundary by appearing to agree with Angela’s concerns at the beginning.
Keep in Mind: A family member feeling stress may seek an ally. Charlotte formed a relationship with Angela, and Angela asked her to help her by talking to her husband about requesting a different oncologist. What would you in Charlotte’s position?
Introduction
“This has been hard on all of us.”
When an individual is diagnosed with a medical condition, their family members and other loved ones are also affected. Immediately after learning of the diagnosis, family members may also experience a Flight, Freeze, Fight reaction, though they may react differently than the newly-diagnosed patient. They also experience many of the same emotions as the newly-diagnosed patients, including fear, anger, and sadness. As family members experience their emotions, they may be able to share their feelings with the patient and support each other, and draw closer during this experience. Or they may be hesitant to share how they are feeling, which can lead to a breakdown in communications.
Treatment regimens or lifestyle management requirements may result in a change in the daily household routine which can, in turn, result and inconvenience, if not stress, for other family members. Other family members may be faced with taking on additional responsibilities, either because the newly-diagnosed patient will no longer be able to handle certain responsibilities, such as housework, or because new responsibilities, like transportation to and from medical treatments, have been added. Fear of change is a factor is the stress felt by family members, who may be concerned that the newly-diagnosed patient will no longer be the same and that their lives will also be affected. While patients may fear that they will become a burden to their family, family members may welcome the opportunity to be involved or they may indeed feel burdened. Financial concerns may arise. The patient’s close friends may be having some of the same reactions, depending on their level of involvement.
Because the medical diagnosis can cause such turmoil in the patient’s home life, patients and their families often have difficulty communicating due to a variety of factors, including fear of saying the ‘wrong thing,’ concerns that the patient needs to ‘stay positive,’ and a desire to maintain some sense of normalcy, even when the evidence indicates that life is not going to be normal anymore.
When patients and their families are not communicating, healthcare professionals may find themselves in the middle, with patients discussing their family members, and family members discussing the patient, with them. Not only can this lead to uncomfortable situations, but the healthcare team often needs to rely on family members to support patients emotionally, help them to make treatment decisions, and act as caregivers during ongoing treatment. All of this is placed at risk if the patient and family members are not communicating.
Healthcare professionals are not required to mediate family disagreements or to otherwise provide family mental health services, yet their ability to be effective in supporting patients medically may be affected by unresolved family communications problems. Healthcare professionals can help by being sensitive to the communications issues that arise between patients and their family members and other loved ones, and offering suggestions and guidance, where appropriate.
FIGURE 11-__
Illustration of family member with two thought bubbles, labeled ‘Why you?’ and ‘Why us?”
Why Her/Him? Why Us?
Just as the ‘Why me?’ question may never be fully resolved for newly-diagnosed patients, those closest to them face the same unanswerable question. Questions of fairness arise, as family members question why someone who in their mind has taken good care of him/herself, and treated others well, would suddenly receive a medical diagnosis. Family members cannot help but further question why their comfortable home environment, which they may have worked so hard to build and maintain, should suddenly be threatened. Furthermore, family members may face questions regarding their own mortality: if someone they viewed as invincible is suddenly diagnosed, this may feel like a challenge to their own assumptions regarding how their lives may progress.
It is human nature to want to avoid feeling helpless and hopeless and the inevitable answer to the ‘Why us?’ question is that bad things can happen to loved ones, as unfair and senseless as that may appear. Family members are often afraid to voice this question to other family members out of a desire to avoid discussing, and possibly admitting to, their own inability to control what happens to others, and to themselves for that matter. They may also avoid these discussions for fear they will appear selfish or be viewed as not having a positive attitude. Yet, not talking about the ‘Why us?’ question does not make it go away.
The ‘Why us?’ question is most likely on the mind of everyone in the patient’s family, depending on the severity of the diagnosis and their fears, and assumptions, regarding how the diagnosis is going to affect their family life. This question will also have an influence on the kinds of emotions that family members experience, just as it does the emotions experienced by patients. Patients and their loved ones may all be struggling with this question, and the feeling of helplessness that often results, will affect the way in which they interact with each other, and with healthcare professionals.
Keep in Mind: If a family member received a serious medical diagnosis, how would you react? Would you label your reactions as Fight, Flight, or Freeze? How would your family member most likely react? What would that mean for how you communicated?
How Family Members Initially React to the Diagnosis
Family members, and others with whom the newly-diagnosed patient has a close relationship, have initial reactions to the diagnosis as the patient – shock, followed by Flight, Freeze, Fight – though not necessarily the same reaction.
Flight
A family member may react to the diagnosis with a rush of emotions that, at least temporarily, prevents him/her from being able to be effective in terms of understanding the diagnosis and its treatment, helping to make treatment decisions, or otherwise being a support in a way that involves rational thinking. Much of a family member’s Flight reaction is based on fear, not only for the patient’s well-being, but also fear of how they will be impacted. Family members in Flight reaction may be upsetting to the patient, who may feel that he/she needs to come to their assistance, or otherwise reassure them that they can handle their diagnosis. The patient may deprive him or herself of needed emotional support due to this concern for the welfare of the family member. Family members in Flight reaction may also avoid the patient out of concern that their out-of-control emotions will cause the patient to become more emotional as well. On the other hand, a family member in Flight reaction may also attempt to impose a treatment approach on the patient as a means of dealing with his or her own helplessness, even if it is not the best approach.
Freeze
Family members in Freeze reaction are likely to avoid discussing the diagnosis with the patient, rationalizing that that the patient wants to be in control of the situation and will reach out to family members if their assistance is needed. The Freeze reaction may also be based on the assumption that the condition is the patient’s fate, and that he/she is powerless to do anything to help. Patients who need family support, in terms of making healthcare decisions and ongoing caregiving, will avoid family members who are in Freeze reaction. If the patient is also in Freeze reaction, the healthcare team may be faced with having to motivate the patient and family members to face the diagnosis and become active in dealing with it.
Fight
One or more family members who react to the newly-diagnosed patient’s condition in Fight reaction can be positive in terms of offering strong support in making informed treatment decisions and getting through treatment. If the patient is in Flight or Freeze reaction, having a caregiver who is a Fighter can make all the difference. On the other hand, if the patient is also a Fighter, conflict can result when the patient feels that the family member is attempting to interfere with their own control over their treatment.
Figure 11-__
An illustration of a family, surrounded by thought bubbles, each containing one of the emotions identified in the sub-heads below, e.g. ‘Shame,’ ‘Anger,’ etc.
Emotions Experienced by Family Members
As family members and others close to the newly-diagnosed patient react to the diagnosis, they experience emotions similar to those of the patient. The following are emotions commonly experienced by family members.
Fear
“When I learned about my husband’s condition, all I could think about was how scared I was. I was terrified that he might get really sick and that I could lose him. I didn’t want to be without him. And I was afraid about what this might mean for our children, if he was going to be able to keep working at the same level he had been, and what kinds of responsibilities I might have to be taking on at some point.”
The level of fear that may be experienced by family members should not be underestimated. First of all, family members fear for the future of the newly-diagnosed patient. While some conditions, such as cancer and diabetes, raise obvious concerns about disability and even death, virtually any medical diagnosis can cause family members to become fearful. Medical diagnoses are confirmation that human beings are not invincible, and that family members who are depended upon to meet certain expectations and responsibilities – as a partner, parent, sibling, friend – may not always be able to fulfill their roles. Fears around loss of emotional support, but also raise fears around finances as well.
Family members often feel pressured to put on a positive face around their newly-diagnosed patient, as does the patient with family members. Yet the fear factor will often emerge in ongoing communications between the patient and family members. For example, necessary conversations around topics such as treatment options, and needed practical support, may be avoided out of a need to avoid both feeling and expressing the fear that these conversations cause. Also, out of their fear of feeling helpless, family members may become overly controlling, and attempt to micromanage the patient’s care. This may cause family members to dictate their expectations to the healthcare team and to have conversations about the patient’s care that the patient is excluded from, followed by tension and frustration for everyone.
Anger
“I was so mad, that’s all I could feel. I was mad that my mother was going to have to face all of this treatment. What had she done to deserve this? I was mad that she and my father had made so many plans and now they might not be able to enjoy the future they had planned. I walked around feeling angry for a long time.”
Family members feel anger for a variety of reasons. Anger is an emotional reaction to the sense of unfairness, and helplessness, that come from having to watch a loved one suffering in some way and not being able to stop it. Anger also arises from disappointment and fear that life is changing in ways that are unexpected and unwanted, and that future plans may not unfold as expected. Anger is both a comfortable and an uncomfortable emotion. In Western culture, anger is an acceptable emotion that, while justified in its own way, is also used to substitute for emotions that are less comfortable, such as sadness and fear. Yet individuals who are feeling angry may try to avoid these feelings out of concern that if they really allowed themselves to feel as angry as they do, then they might lose control of it.
Fear of losing control will often prevent family members from expressing angry feelings around the patient, though angry outbursts may occur, often followed by guilt and remorse. More often, anger is directed away from the real source of the anger, toward targets that are somehow perceived as more ‘safe.’ Unfortunately, family members may direct anger toward healthcare professionals. For example, a family member may make an issue of a task that they think a CNA should have performed, such as replacing a towel; complain that a nurse did not recommend a test when they thought it should have been; or express outrage that a healthcare professional was not warm and friendly toward their loved one. While these complaints may or may not be justified, the anger that family members express is potentially much greater than the actual incident might warrant. In other words, a family member may vent all of their rage at an unmade bed when what is really making them angry is the helplessness they feel in knowing that someone they care about is sick and in treatment.
Sadness
“I didn’t want to tell my brother how sad I felt, but he must have known. He had been so healthy and strong. I had always looked up to him. I still did, but I couldn’t help but think that over time he would likely lose his strength, and he might be faced with other medical conditions related to his diagnosis. I knew his future wasn’t looking too bright anymore.”
A feeling of sadness is a common reaction to learning that a family member has received a medical diagnosis. Sadness comes from a sense of loss, or the fear of potential loss, as family members struggle to accept the patient’s illness and whatever changes may accompany it. Family members may experience sad feelings that are so intense that they appear to be in grief, at least when the patient is initially diagnosed, and before they have had time to process the news. Their experience of sadness may also be less intense, yet nevertheless be something that they carry with them at all times. Either way, the sadness that family members experience may be difficult for them to let go of, and they may feel that everything they encounter is somehow colored by the sadness that they carry.
As with anger and other strong emotions, when family members feel sad, they may be quick to act – and overreact – to the events that occur, and may not always behave rationally. They may break down and cry for no apparent reason, causing distress to the patient, if not the healthcare professionals who may feel as if they are the cause of the outburst. Family members have difficulty conveying their sadness to the patient directly, out of fear that they may further upset the patient. Superstitious thinking may play a role here – family members may feel that if they verbalize their feelings of sadness – say how sad they feel out loud – they may ‘make something bad happen.’ Therefore, they often attempt to hide their sadness from others, if not from themselves. The result is indirect communication – talking around the issue but not expressing direct thoughts and feelings, or not discussing the issue at all having emotional reactions that may appear to come out of nowhere.
Relief
“I was relieved that it wasn’t any worse. She had been feeling so badly that I had prepared myself for all kinds of possibilities, most of them pretty bad. But as it turned out, she had a lot of medicine in her future but, if she took good care of herself, which I intended to help her do, chances are she would live a full life. I know that everything is going to be just fine now.”
Just as newly-diagnosed patients may feel an intense sense of relief that their diagnosis is not as severe as they feared, their family members may feel the same way. It is human nature to imagine worst case scenarios before a diagnosis is being made, as a way of being prepared for any potential outcome. Family members who have had past experiences with illness, personally or with others, or who are aware of a condition that the patient could have inherited but apparently did not, will also feel relieved if the newly-diagnosed patient has received a diagnosis that is, in their minds, less severe. It is important to note, however, that family members can also feel relief due to a lack of information about the diagnosis and what it might mean for the patient’s future. This can be a form of denial.
Relief can be a positive emotion, and cause family members to have an optimistic attitude and take challenges in stride because they are mindful of ‘what could have been,’ and encourage the patient to do the same. However, relief can also contribute to difficulties in communication. Family members can feel relieved to the extent that they are not open to information that runs contrary to their optimism. They may convey to the patient that they aren’t open to hearing anything ‘negative’ and the patient shouldn’t either. They may be resistant to information that healthcare professionals attempt to convey, or to recommendations, that don’t seem to be consistent with their views. Healthcare professionals may need to help family members to modify their expectations, so that they can cope realistically with the diagnosis, and help the patient to do the same.
Guilt, Shame, Blame
“I have to say that I was embarrassed when my son told me that he had been diagnosed with Hepatitis C. I always thought of that as a disease that drug addicts and street people get. I felt ashamed. I didn’t want to think of him as having been a drug user, though I suspected he might be. If it was related to drugs or sex or something like that, then I thought I must not have done a very good job as a father, like maybe I had let him down, hadn’t taught him how to live a good life. So I felt guilty about being a bad parent, and I felt guilty about being ashamed of my own son. But still, ashamed of having a son with Hepatitis C. It was terrible.”
Newly-diagnosed patients may feel guilt and shame around their diagnosis, and so may their family members. They often experience shame when their family member is diagnosed with a condition that is primarily sexually-transmitted, such as HIV. A condition that may be related to the use of illegal drugs, such as Hepatitis C in the above example, can result in shame. Also, conditions that are lifestyle-related, such as lung cancer and Type II Diabetes, can also result in shame when a family member feels that the patient could and should have avoided the condition if they had made other lifestyle choices. Unfortunately, lack of information about the condition and its cause can may be a factor in the shame that family members feel.
As an emotion, shame is often closely related to guilt. Family members feel guilty about being ashamed of their own family members. Guilt also arises when family members question whether they could have said, or done, something to prevent the condition, e.g. intervening with a loved one with a drug problem, or who is overeating, or smoking. Also, guilt and shame arise out of concerns over what other people, inside and outside of the family, with think or say when they learn of the diagnosis.
The guilt and shame that family members feel in relation to the newly-diagnosed patient’s condition is invariably complicated. Family members may have a long history of relationship difficulties, and they may have experienced guilt and shame regarding the patient’s behavior or lifestyle, as well as emotions such as anger, for years before the actual diagnosis occurred. As implied in the example, however, guilt and shame may arise out of ignorance. For example, while Hepatitis C may indeed be transmitted through the use of illegal drugs, there are a number of other ways in which it may be transmitted. Consequently, family members may need to be educated along with the patient, so that they can gain a perspective on the potential causes and deal with their emotional reactions.
Family members may assign responsibility for the diagnosis to the patient, and blame the patient for the diagnosis and communicate in a way that conveys that they feel ashamed. If family members do not deal with feelings of guilt and shame, and blame the patient for the diagnosis, they will not be able to offer support to the patient, and instead withdraw or, on the other hand, express their feelings in a hostile or judgmental manner. These reactions may in turn cause the newly-diagnosed patient to have feelings of guilt and shame, which will further damage his/her self-image.
Healthcare professionals can greatly assist families in dealing with the patient’s diagnosis by offering information about the condition and encouraging family members to do their own information-gathering. Furthermore, encouraging family members to talk with an objective person and/or a mental health professional, can be of great benefit to them as well as to the patient.
Keep in Mind: Think about the emotions that family members experience in response to the patient’s medical diagnosis. As a healthcare professional, if a member of a patient’s family was expressing one of these emotions, which emotions would you feel most comfortable with? Which emotions would make you uncomfortable?
Common Communications Issues Between Caregivers and Patients
Common communications issues that arise between newly-diagnosed patients and the family members and friends involved in offering care and support are described below:
FIGURE 11-__
Illustration of a group of people surrounding a large elephant.
Let’s all ignore the elephant in the room.
When a family member is diagnosed with a medical condition, patients and family members may have difficulty discussing many aspects of the condition and its treatment because no one wants to admit that they feel helpless to do anything to ‘fix’ the situation, and they don’t want each other, or the patient, to know how they feel. In this way, helplessness becomes the ‘elephant in the room’ that everyone knows is there but no one wants to talk about. Patients and family members will often avoid talking about how helpless they feel out of concern that they might discourage each other. Yet refusing to acknowledge all of the fear and insecurity that accompanies helplessness does not make it go away. Instead, the elephant in the room may become larger and larger, and show its presence through avoidance of discussing anything that might cause anyone to feel, and potentially reveal, their sense of helplessness.
Family members may attempt to avoid the feelings of fear and helplessness through a ‘can do’ attitude and the belief that hard work will conquer any challenge, which will be discussed later in this section. Helplessness may also be avoided through an insistence on keeping a positive attitude, in spite of any evidence to the contrary, as if ignoring the challenges will make them go away. In either case, avoidance of the feeling of helplessness can lead to more stress if patients and family members attempt to cover their feelings and avoid discussing uncomfortable topics like treatment decisions, recovery, and strategies for handling potential outcomes such as loss of work and support needs.
Healthcare professionals will also be affected by the ‘elephant in the room’ mentality. Family members will often attempt to influence healthcare professionals to join them in ignoring the ‘elephant in the room’ by avoiding the discussion of difficult topics, such as potential challenges of treatment and recovery, as well as potential outcomes, and assuming that the healthcare professionals are all doing their jobs, and will relieve the family of thinking anything that might increase their feelings of helplessness.
From the patient’s perspective
It was not easy for Connie to deal with the news of her medical diagnosis, but she has learned to accept that she is going to have to watch her diet closely and stay consistent with her medications. Nevertheless, she worries that even if she is diligent about being complaint, her doctor did not promise her that she would not experience additional complications over time, or that she wouldn’t need to potentially change regimens if her current one was proven to be ineffective. ‘We’ll watch this closely,’ he had promised her.
“I don’t know what’s going to happen to me. I was symptom-free and now I’m in treatment, and have no idea what might or might not be ahead of me. The hardest part is trying to keep a stiff upper lip with Ethan. He must be worried about what’s going to happen to me, and what that might mean for our family. But it’s like he thinks that if I talk about how out of control I feel here, then I will make more bad things happen. So I keep my mouth shut.”
From the family member’s perspective
Ethan, Connie’s husband, described himself to a friend as ‘the walking wounded.’ Connie’s diagnosis took him totally by surprise. He immediately mobilized to be an active partner with Connie in facing her condition, become educated on her condition and volunteering to meet with her healthcare team to learn about how he could best help her. In Ethan’s mind, their communication about Connie’s condition and its treatment is fine. He wants her to ‘keep her spirits up’ and not dwell on anything that might be discouraging.
“Connie and I really share information. I know as much as she does about it, if not more, to be honest. Her doctor and I have even talked about potential complications and what we need to do to avoid them. But I don’t want to burden her with any of this. Sometimes I can’t stop thinking about how worried I am, and how I feel like our home life could spin out of control if her condition suddenly worsens. I try not to let it show. If she doesn’t’ talk about things that might upset her, I think she will have a better chance.”
Let Me Handle This
When something is obviously broken, it is human nature to want to fix it. For better or worse, this is often the guiding principal of family members and other caregivers in their interactions with newly-diagnosed patients. They see a loved one who may not be feeling or behaving as they once did or they fear that their loved one will change in unpredictable ways in the future. So, in reaction to these changes, or the changes they anticipate in the future, they jump in to fix whatever they can in the hope that they can ‘make everything better.’ Unfortunately, when a family member says to patient, ‘let me handle this,’ what is intended as a favor may in actuality not be beneficial to the family member or to the patient.
When family members step in to help the newly-diagnosed patient, they often step in uninvited. The patient – especially if he/she is a Fighter – most likely wants to maintain of treatment decisions and handling responsibilities of daily life. Furthermore, newly-diagnosed patients may not yet know enough about their condition and its treatment to have decided the way forward, and so the assistance offered by family members and caregiver will be perceived as premature and unwelcome. Fighters feel disempowered when their family members offer unwanted advice and assistance. Those in Flight and Freeze reaction, on the other hand, could benefit from family members who offer assistance but gently encourage them to get involved in their own healthcare, rather than stepping in and managing it for them.
The desire to step in and take over for a newly-diagnosed patient, while well-intentioned, also comes from the sense of helplessness that family members and other caregivers are experiencing. Consequently, while wanting to help the patient, they are also trying to help themselves; that is, they are involving themselves in the patient’s healthcare as a way to deal with their own fear of uncertainty. If they can make the patient’s problems go away, they hope to make their own helpless feelings go away as well. However, attempting to take the newly-diagnosed patients’ control away is more likely to lead to frustration, conflict, and disappointment for both patients and family members.
From the patient’s perspective
Jacob has always described himself as a ‘control freak.’ He started a successful business and ran it for 30 years, and would have continued to run it, had he not been diagnosed with a heart condition and ordered by his physician to cut back on his workload. Jacob has lived alone since his wife died. He has grown children who want to be involved in providing any emotional or other support that he might need, including completing work around the house. But true to form, he has refused.
“The kids try to bring up the topic of how they can help poor old dad, but I won’t hear of it. I know my daughter, Ellen, is as much of a control freak as I am. She will want to jump in and take over, thinking that’s what I need her to do. First, she’ll do the housework and before you know it she’ll be telling me what I can eat and when I need to go to bed at night. I know she means well, but I’m not going to have them turning me into a guest in my own home. I can handle this on my own. And I don’t see any reason to talk about anyone else getting involved.”
From the family member’s perspective
Jacob’s daughter, Ellen, admits that she has been worried about him since her mother died. She didn’t think her father was eating well, or getting enough exercise, and working too many hours. Consequently, when he was diagnosed with his heart condition, she wasn’t surprised, though she would never admit that to him. Now that he has been diagnosed, Ellen regrets not having been more outspoken when she was first concerned, and she wonders is her father’s heart condition might have been avoided had she been more assertive.
“I feel like I let this happen in some ways. I should have jumped in and made him take better care of himself, even if it might have caused some friction at first. But it’s too late. At this point, I feel like I have another chance to make sure he stays as healthy as possible, and that means being compliant with the doctor’s office. He doesn’t take orders very well, but I’m not trying to order him around. I just want to help out with some of his chores and see where I can give him some encouragement to stay with his program. But if he cuts me off when I bring up the subject, I don’t know how far we are going to get.”
FIGURE 11-__
An illustration of a smiling face with the words: ‘Positive Thinking Required!’
Keep in Mind: Have you ever been in the position of feeling like you needed to think and act in a positive manner when you weren’t necessarily feeling that way? You may have felt like you were helping the other person to maintain a positive attitude or you may have felt like you were hiding your own emotions. Who benefitted the most?
Stay positive!
As has been discussed in previous chapters, denial is a common reaction to the news of a medical diagnosis. Many patients initially experience denial around their condition but will, over time, come to terms with their diagnosis and move forward with the decisions that need to be made to assure that they receive the treatment they need. Of course, there are patients who continue to struggle with denial. Family members also often experience denial regarding their loved one’s condition; they may follow a similar pattern in terms of experiencing denial when initially hearing about the diagnosis and then, over time, accepting it as reality. Family members may express their denial as a desire to remain hopeful in spite of any and all evidence that the outcome may not be as they had hoped. On the other hand, it may also be expressed as a refusal to think about or discuss the patient’s condition at all, and basically leave it to the patient to make decisions and otherwise cope with their condition. As with patients, some family members are better able to face the reality of the diagnosis than others.
When family members are in denial, the result is a breakdown in communication. Rather than talking around the condition, they may refuse to discuss it as all. Or they may focus on the positive to the extent that the patient may feel that his/her situation is being completely ignored, and that any attempts to discuss it are not going to be acknowledged. Often, family members in denial are selective in what they will talk about. For example, they may be willing to talk about the patient’s treatment, though in terms of expectations of a positive outcome. However, if the patient attempts to discuss concerns around issues such as less than positive treatment outcomes, additional side effects, or recurrence, family members may refuse to consider these possibilities, leaving the patient feeling unsupported. In turn, patients may look to healthcare professionals to have these discussions with them, and family members may request that healthcare professionals encourage patients not to focus on these concerns.
From the patient’s perspective
When Claudia first received her rheumatoid arthritis diagnosis, she refused to believe it. She asked her doctor to order a new set of tests, which she did, to re-confirm that the diagnosis was accurate. While Claudia had known that her condition was heredity in her family, and she and her sisters might also be affected, she had hoped that they might all be spared. She and her sisters had occasionally discussed their fears but, since up until now none had been diagnosed with it, they had never really discussed in more than general terms. When Claudia received her diagnosis, she was surprised at the reaction of her sister, Carmela.
“I said to her, ‘Carmela, I have Mom’s condition. I might be going through what she went through,’ and Carmela might as well have told me to get over myself. She told me to stop worrying, that the medicines were a lot better and that I would be fine. I kind of agreed, but I still wanted to talk to her about what I might need if things didn’t work out so well, and ask her if she would be able to help out with my son if there came a time when I wasn’t able to function so well, and she interrupted me and told me to stop being so negative. Instead, she tells me to think positive and keep smiling and everything is going to be fine. I feel like she is going to call the positive thinking police on me if tell her how I am really feeling.”
From the family member’s perspective
Carmela would have difficulty explaining how she is feeling about Claudia’s diagnosis because she is uncomfortable with the feelings she is experiencing. She is angry that Claudia may experience what they watched her mother go through as she became increasingly ill; she doesn’t want to go through this again. She is concerned about how Claudia will cope with her responsibilities as a mother if she becomes debilitated, and what life will be like for her son. Carmela is also fearful about her own future; Claudia’s diagnosis has brought the possibility of being diagnosed that much closer to being a possibility for herself. She knows that Claudia needs to talk about her diagnosis, but she hasn’t been able to have that conversation yet.
“I fully intend to be there for my sister in whatever way she needs me. I really do. But I’m not ready and I don’t know when I will be. And maybe this is selfish but what I need my sister to do is to be strong and to fight this. I need her not to even think about the possibility that she won’t beat it and have a normal life. I can’t help but believe that if she refuses to give in, and doesn’t make any room for it in her life, that she will be fine. That’s what I need her to believe, too.”
Can’t You Do Something For Yourself?
In Western society, individuals are often reared to believe that virtually any challenge can be overcome by hard work. Patients who are in Fight reaction will often this attitude and apply it in terms of become educated and making informed treatment decisions, followed by an empowered attitude during ongoing treatment and compliance. Their families may have a similar attitude and partner with the patient by taking an active role in their healthcare. However, communications problems may arise when the patient’s family adopts the attitude that the patient needs to ‘do something for yourself’ and the patient feels her/she is doing everything possible. Also, the Fighter who is left to make decisions, and cope with treatment recommendations, independently may not receive needed feedback and support from family members.
Newly-diagnosed patients in Flight or Freeze reaction are also affected when families demand that they adopt an empowered attitude toward their condition. Patients in Flight reaction may become even more anxious if they perceive that their families are abandoning. Additionally, patients in Flight reaction, who have unquestioning chosen a treatment alternative that is not in their best interest may need the involvement of family members to help them make a more rational, and less emotional, decision. If family members are not willing to become involved in the decision-making process, the patient in Flight reaction is more likely to make an incorrect decision. Newly-diagnosed patients in Freeze reaction are at risk for not facing their diagnoses and consequently not becoming active in making decisions or being treatment compliant, and may therefore need the involvement of family and/or friends who are willing to offer support and advocacy.
While the ‘do something for yourself’ attitude on the part of family members may be based on the concern that the patient be as active as possible, family members may also adopt this attitude for other reasons. For example, leaving all responsibilities to the patient to handle is a way of avoiding the uncomfortable emotions that the diagnosis may be stirring up. This attitude is also a form of denying the seriousness of the diagnosis by hoping that the patient can somehow make it go away on his/her own if the family pretends it doesn’t exist. Healthcare professionals will be affected by this attitude if, in the process of organizing support around the treatment, and ongoing compliance, they are not able to involve the family members who will need to play key roles.
From the patient’s perspective
Daryl has been told by his orthopedic surgeon that his spinal surgery will be more extensive than he had expected. Not only will be he hospitalized for at least a week, but it may be a month or more before he is able to return to work, and then he may be able to work only part-time until he is fully recovered. His surgeon told Daryl that he couldn’t be any more definite until after the surgery was completed. Daryl is worried about his recovery and how it will impact his wife, Gale, and their young child. However, when he attempts to talk about his concerns with Gale, and his surgeon’s nurse, Monica, Gale tells him that he can ‘get back to work right away if he is determined to get better’ and changes the subject.
“I know Gale is worried about me and what this is going to mean for us if I need to delay my return to work. I think she is as scared about it as I am. But instead of being willing to talk about a strategy with me for how we will deal with my recovery if it is slower than we expected, she makes me feel like I am trying to get sympathy or turn my recovery into a vacation. Last night, she told me that if I work extra hard in physical therapy, I can probably shorten my recovery to a week or two and go right back to work. Like it’s all under my control. Well, I can tell you that the doctor is not telling me that. “
From the family member’s perspective
Gale doesn’t want to admit that she is afraid about the future. She wants Daryl to feel better and be back to normal and she wants to assure that their income will soon recover, since she is not currently employed. She doesn’t want to imagine the possible outcomes and she certainly doesn’t want to discuss any of this. She is in her own Flight reaction to Daryl’s condition. While Gale knows that Daryl is not in control of the outcome of his surgery, and that surgeon can’t make promises, she wants to believe that a determined attitude and hard work on Daryl’s part may lead to a miraculous recovery. She is hoping that she can push him hard enough to recover as fast as she needs him to.
“Daryl has always been a hard worker and a very determined person. And so it scares me when I see that he is not able to live a normal life. I want to do everything I can to encourage him to be the person I know he is and to take charge of this situation. He can do it if he keeps working. If I can keep pushing him, this will all be nothing but a bad memory.”
Keep in Mind: How do members of your family react to bad news? Their reactions might give you some insights into how they would react to a family member’s medical diagnosis.
How Healthcare Professionals Can Encourage Patients and Families to Communicate
Healthcare professionals can play a role in enhancing communication between patients and their families. This does not require any form of direct intervention or otherwise acting as a mediator as patient-family communications issues arise, nor would this be advisable. Instead, healthcare professionals can act in more subtle ways, including taking advantage of educational moments, to encourage communication. Suggestions are provided below:
FIGURE 11-__
An illustration with the subheads below as building blocks, e.g.:
Acceptance of emotions
Self-care
Compassion
Information
Self-image
Encourage family members to accept their own emotions.
When the patient is ill, the family also experiences illness. As discussed in previous chapters, a medical diagnosis brings up a lot of emotions. Just as newly-diagnosed patients may avoid expressing their emotions, especially those emotions that they may feel they ‘shouldn’t have,’ such as fear and anger, their family members will often avoid expressing their own emotions, for the reasons discussed above. Out of the need to talk to someone about how they are feeling, they may reach out to a healthcare professional, as an objective person whom they know will understand how they are feeling.
Healthcare professionals can be helpful in these situations by providing a sounding board for family members, beginning by encouraging them to express how their feeling. While it is not recommended that healthcare professionals give family members advice on communicating with patients, simply having a chance to express their feelings can provide a chance to release the tension that comes from attempting to hold their feelings inside. Reassurance that their feelings are acceptable will help family members realize that that it is normal to have strong emotions. This release of tension will enhance their communication with the patient. Additionally, having had a safe place to discuss their emotions, family members may gain a greater comfort level in expressing their feelings with the patient. Remind patients and family members that everyone is being affected.
What not to say
“You shouldn’t be feeling this way.”
“You really need to tell _________ (the patient) how you are feeling.”
“You need to be focused on how your loved one is feeling, not on how you feel.”
“You can’t let emotions get in the way of doing what you can to support _________.”
Words that enhance communications
“I can’t give you advice about how to talk to __________ (the patient), but I am a good listener.”
“It is normal to have a lot of fear and other feelings when someone we love is facing a medical diagnosis.”
“I can see that you have a lot going on. Anything you want to tell me about?”
“I have worked with a lot of patients facing similar diagnoses as _________. I know it is always hard on family members.”
“I know that __________ is going through a lot of emotions from this medical diagnosis, but I can see that you and the other members of the family are too. This is what happens when someone is diagnosed.”
Encourage self care.
Family members are usually think that the best thing they can do for the patient is to be totally focused on their care, devoting all of their emotional and physical energy to this goal. They risk depleting themselves in the process, and leave themselves open to exhaustion, illness, and their own emotional breakdown. Certainly, they will be less effective if they do not also take care of themselves. Healthcare professionals can help by encouraging family members to obtain enough rest, are eating a healthy diet, and take breaks to recharge themselves, as well as to make sure they have emotional support, either through friends/family or mental health professionals. Family members can benefit from a discussion of how to delegate caregiving tasks, as well as referrals to community resources that they might take advantage of. It can be useful to sit with family members and plan a strategy to meet their own physical and emotional needs that supports the strategy that is designed to support the newly-diagnosed patient. This way, self-care for the caregiver can become part of the treatment plan.
Initially, family members may be resistant to the idea that at some point they may not be able to handle all of their caregiving responsibilities because, until they experience what might be involved in caring for the patient, they may feel like they can, and must, be ready for any task that needs to be handled. Consequently, it’s important to present the idea of self-care in a way that will feel like a suggestion and not an order. It may also be helpful to sit down with the patient and family members and talk about caring for each other, so that all, including the patient, feel a sense of responsibility.
What not to say
“Just get through this. You can collapse later.”
“You need to be there for ________, regardless of how difficult it may seem.”
“If you wear yourself out, you’ll be useless.”
“Tell your other family members that they have to roll up their sleeves and help you.”
“Believe me, it may look easy now but you probably won’t be able to handle all of this.”
Words that enhance communications
“Do you think it might help to have some support lined up for yourself, just in case some unanticipated challenges come up?”
“Let’s sit down for a minute and talk about how you’re doing.”
“Would it be helpful if we all got together and put a plan in place, for __________ (the patient) and for all of you, before we start the treatment? I know ________ is concerned about you and will want to be involved in this.”
“You have a lot ahead of you once the treatment begins. Can we take a moment and talk about the best way to help you stay strong?”
Provide a message of compassion.
Once patients and family members begin to face the condition on a daily basis – before treatment begins and after it is underway – it is likely that uncomfortable emotions, such as anger, will surface, regardless of their intentions to avoid any emotions that might lead to outbursts. However, as dedicated as they may be to maintaining an atmosphere of calm, it is only human that feelings like fear and anger will at times lead to words and behaviors that will later be regretted. Feeling guilty, and trying to avoid doing that might lead to additional guilt, can only add to the stress that family members are feeling.
Healthcare professionals can help by gently suggesting that patients and family members can benefit from maintaining an attitude of patience with each other, and reminding themselves that everyone involved is doing the best they can under difficult circumstances. This may be accomplished during ‘educational moments’ when the patient, or family members, are complaining about each other, which they may not do directly but ‘ventilate’ their feelings with a healthcare professional. By doing this, the healthcare professional can help to defuse the feelings. Furthermore, being a good listener, and demonstrating empathy as frustration and complaining arises, can deepen the sense of trust (though it is important to avoid the appearance of taking sides).
What not to say
“I know how you are feeling. These guys must be driving you crazy.”
“Believe me, in your position, I would tell her to get lost.”
“You can take control here. I’ll tell you how.”
“It must make you nuts when he behaves that way.”
Words that enhance communications
“I know this is really difficult for all of you. It’s scary to find out that someone you love is facing serious medical treatment.”
“I can see that you are really frustrated. But this is a lot to deal with and it seems like you are being hard on yourself. Can you give yourself a break here?”
“Anyone would be frustrated in your situation. But it seems to me that you are all doing the best you can under the circumstances.”
“It has been my experience in working with patients that everyone is doing the best they can even though it doesn’t always seem like it. Can you think of it that way?”
Encourage ongoing information-gathering and physician check-ins.
Lack of information interferes with effective communication. When patients or family members are lacking in information, it is human nature to ‘make up the rest of the story,’ which may result in making erroneous assumptions. Furthermore, these erroneous assumptions will lead those involved to come to different conclusions, some more unrealistic than others. In turn, this may lead to further stress for both the patient and the family members. Information-gathering needs to be an ongoing process, with the information needs when the patient is first diagnosed supplemented by further information regarding treatment, ongoing lifestyle management, and other issues. Some of this information may be gathered by patients and family members on their own, but other information will need to be provided by the physician and other healthcare professionals. For example, if a patient is experiencing unfamiliar symptoms, or if the patient or a family member encounters information that is questionable or scary in some way, it may be necessary to consult with the physician before making any further assumptions.
Healthcare professionals can help patients and family members to communicate with each other by suggesting reliable information resources and ongoing check-ins with the physician and other members of the healthcare team. This helps to assure that all involved are acting on the same information, rather than different interpretations and assumptions. The healthcare professional may want to review this information with all involved, at the same time, to further assure that they are equally informed.
What not to say
“You shouldn’t be jumping to any conclusions here without talking to the doctor first.”
“You seem to know a lot about this, so you’re probably right. Let ___________ (the patient) hear what you have to say.”
“Stand up for yourself here. You’ve done your research.”
“That sounds really scary. I haven’t heard of that but I am not up on the latest research.”
Words that enhance communications
“There is a lot of contradictory information on the Internet. Have you all sat down and talked to the doctor about this?”
“It’s important to make sure we set up a routine so that we can monitor you on an ongoing basis as we move forward with your treatment.”
“Let’s all sit down and review the treatment plan, so that we can answer any questions that might have come up. I will ask the other healthcare professionals involved with your case to sit in.”
“I am hearing different opinions from you and your brother about your mother’s care. Why don’t we go over everything together so that we are all in sync?”
“I know the nurse is going to have an opinion about this. Have you talked to him lately?”
FIGURE 11-__
A photo of a patient and family member.
Remind patients and family members that the patient is not a medical condition.
With all of the emphasis on medical information, as well as symptoms and treatment, it is easy to begin to view the newly-diagnosed patient as a medical condition rather than a human being. Family members may become so concerned about the patient’s healthcare that every issue that arises becomes, in their minds, a medical issue, and they forget that the patient has non-medical needs. Consequently, family members may unintentionally begin to treat the patient as if they are ill, and assume that the patient needs medical attention when they don’t. Or, they may modify their expectations for the patient, e.g. assume that he/she is not going to be able to participate in certain activities, and begin to plan events around the patient, or not request his/her input into decisions.
Family members may begin to gradually shift their behavior toward the patient when he/she is initially diagnosed, even before they actually know what kinds of limitations the patient is going to have, if any. This may part of their own adjustment to the patient’s diagnosis, and a way of preparing for the worst by getting used to thinking of their loved one as someone with a medical condition. It is also a way of coping with their own helplessness by being as considerate of the patient’s condition as possible, even when it is not needed. Newly-diagnosed patients may respond in various ways to being treated as if their identity revolved around their medical diagnosis. Some will most like not respond well to being treated this way, which will lead to interpersonal tension. On the other hand, being treated like a patient can also reinforce a dependent, disempowered self-image as well.
Healthcare professionals can gently step in when they see family members begin to treat their loved one not as a whole person but as a ‘patient.’ They can do this by subtly reminding the family members that the newly-diagnosed patient is able to make decisions about when medical intervention is needed and when it isn’t. Educating family members about any activities that the patient can continue, and those that may be challenging, can help them to have a realistic perspective on the patient’s potential level of involvement. Additionally, simply making sure that the patient is involved in all discussions, so that family members talk with the patient and not around the patient, can provide an opportunity for the patient to maintain an active role. It’s important to keep in mind that family members are most likely inexperienced with the patient’s diagnosis as well as in relating to the patient from a medical perspective, and may require some patient coaching to understand how to help their loved one to maintain his/her essential humanity.
What not to say
“She probably can’t participate so just don’t bring it up.”
“Now that your ________ (sister, brother, spouse, parent, etc.) is a ____________ (diabetic, arthritic, cancer patient, etc.)…
“Stop treating _________ (patient’s name) like a sick person.”
Words that enhance communications
“Your __________ (sister, brother, parent, etc) is still the person he/she always was. Medical conditions introduce new challenges but people stay the same they always were.”
“Talk to _________ (patient’s name) about how much he/she feels like participating. “Other than some of the restrictions that the doctor mentioned, the decision is up to __________.”
“Why don’t we all get together and talk about what everyone’s role is going to be. We’ll start with __________ (the patient’s) perspective.”
“I know you’re concerned about how the diagnosis is going to affect what her life is going to be like, but there is no reason why she can’t continue to be a well-rounded person, just like she has always been.”
Keep in Mind: Patients and their family members can benefit from similar guidance and suggestions from healthcare professionals as they deal with the impact of the medical diagnosis. If you were in the position of being a family member with a newly-diagnosed loved one, what could a healthcare professional say to you that would be most helpful?
Caution: Ethics and Boundaries
Under any circumstances, family relationships are complicated. Consequently, it is always advisable to approach involvement in communications issues between patients and their family members, and other caregivers, with professional ethics and boundaries in mind.
Stay focused on the responsibilities of the healthcare professional.
The primary responsibility of the healthcare professional is to deliver and manage the patient’s treatment protocol, and advocate for patients in terms of monitoring their ongoing well-being. When evaluating how to handle communications problems with patients and their families, it is best to consider any actions from this perspective. Communications between patients and their family members may directly impact treatment, e.g. when caregiving responsibilities and compliance with treatment regimens are involved, or when the patient’s well-being is at risk. Otherwise, it may not be appropriate for healthcare professionals to become involved.
Know the guidelines at your office or facility.
Most medical offices or healthcare facilities have established guidelines for dealing with issues that are not specifically medical in nature, including psychosocial issues, which would include family communications. These guidelines may be formally established, or they may be informal. In either case, it is recommended that healthcare professionals be aware of any guidelines before taking action to intervene in patient-family communications. HIPAA guidelines also play a role here: healthcare professionals may not discuss a patient’s situation with anyone not specifically designated by the patient.
Know your skills and when you need to bring in outside resources.
Based on both experience and training, healthcare professionals are often qualified to offer assistance when communications issues arise. However, it is important for the healthcare professional to be aware of when the line between medical care and mental health care is being crossed. Larger healthcare institutions may have social workers or counselors on staff who can get involved when psychosocial issues arise, and medical offices often have referral resources available which staff members can pass on to patients. Again, formal and informal guidelines – and a conversation with a supervisor – can be useful in clarifying the options.
Know when your own buttons are being pushed.
Family relationships are always complicated in one way or another. It is only human to have childhood memories around family that are both positive and negative and, as adults, to have areas of disagreement that may at times present relationship difficulties. It is not uncommon for healthcare professionals to observe patient-family interaction and to be reminded of their relationships with members of their own family. Sometimes, what they observe can be so similar to their own family dynamics that they experience some of the same emotions as their patients and their families; in other words, the healthcare professional’s ‘buttons’ can be pushed. It is important to be aware of when this is happening. Otherwise, the healthcare professional may become lose track of professional boundaries, and say things, or otherwise become involved, in a way that is inappropriate. ‘Fixing’ the patient’s family does not ‘fix’ one’s own family. When aware that boundaries are at risk, it is recommended that healthcare professionals reach out to a co-worker or a supervisor to become involved.
Don’t take sides.
When people are in conflict with each other, it is only natural for everyone involved in the conflict to seek out allies. By the same token, when a family member wants to influence a patient’s treatment in some way, or wants to persuade the patient to, for example, conform with their expectations for compliance or lifestyle changes in some way, they may seek out an ally to help them to make their case. The patient may also seek out an ally. Healthcare professionals may unsuspectingly find themselves in the position in which the patient, a family member, or both are expecting them to be that ally. This can be not only uncomfortable for healthcare professionals, but also present ethical issues. Even appearing to be in agreement may cause a patient or family member to assume that a healthcare professional is an ally and may, in turn, call upon the professional to support them. The healthcare professional’s first responsibility is to assure that the patient is receiving the best care possible. Beyond that, maintaining neutrality, and making this clear to patients and family members, is recommended.
SIDEBAR: BODY LANGUAGE:
Family members of newly-diagnosed patients who are experiencing stress may show it in their body language through:
- An angry expression
- A frightened, tearful expression
- Standing with a defiant posture, with his/her hands on hips and with a wide stance
- Sitting with arms crossed as if refusing to listen
- Unable to sit or stand still due to feeling agitated
SIDEBAR: SELF-TALK
Feelings of fear and hopelessness in regard to a family member can be reinforced in self-talk that includes:
I can’t believe this is happening to our family. We haven’t done anything to deserve it.
The medical establishment doesn’t care about any of us and probably won’t give us the help we need.
We are surrounded by uncaring and incompetent people.
No matter how hard anyone tries, this isn’t going to have a happy ending.
I will never be able to make these doctors and nurses understand me.
Antidotes to family members’ negative self-talk includes:
I am surrounded by smart and caring professionals. I need to be more patient.
We are all doing the best we can here, in spite of how we might step on each other’s toes at times.
I can take one day at a time and see this through.
The doctors and nurses have been through this with patients and their families before, and they understand what we are going through.
SIDEBAR: EDUCATIONAL MOMENT
Family members are most likely not familiar with working with medical professionals and may feel like they all speak a foreign language. By demonstrating direct, compassionate communication, healthcare professionals can be a model for families in how to communicate with the patient, with each other, and with the healthcare team.
Rx: Discussing Communications Between Newly-Diagnosed Patients and their Loved Ones
Angela, the family member with concerns about her husband, Logan’s, medical care at the beginning of the chapter, was hoping that Charlotte, the LPN with whom she had formed a relationship, would intervene with her husband and persuade him to request another oncologist. Charlotte knew that she could not ethically be involved in this conversation, and was concerned as to how to help Angela without overstepping boundaries and/or making the situation worse. She asked Betty, the nursing supervisor the floor that evening, to get involved. The three of them met in the conference room.
Betty: Hi Angela. We haven’t met before but I’m Betty. I’m an RN and I’m the supervisor on duty tonight. Charlotte tells me that you have some concerns about your husband’s treatment.
Angela: Hi Betty. I have a lot of concerns, which I mentioned to Charlotte. Didn’t she tell you?
Betty: She did talk to me, but I thought you, Charlotte, and I could have a conversation together to see how we can help you. I’d really like to start by hearing directly from you what’s going on.
Angela: Okay. I don’t think my husband, Logan, is getting the best care. I don’t like his doctor, for one thing. And I can’t seem to persuade Logan to consider my request to bring in another doctor.
Betty: How were you hoping the nurses could help you?
Angela: It’s obvious that are more involved with Logan’s care than the doctor is because you’re with him all the time. And since Logan and I both like Charlotte, all I did was ask her to have a little chat with Logan, and maybe suggest another doctor on staff her that he might consider. Since Charlotte agrees that we have a problem, and Logan seems to trust her, I thought he might listen to her more than he is willing to listen to me. Was I wrong?
Betty: I understand, Angela. You were hoping that Charlotte might talk your husband into working with another doctor?
Angela: That’s exactly right.
Betty: Did you want to say anything, Charlotte?
Charlotte: Sure. We see a lot of family members on this floor who are worried about their family members. It’s only natural that they would want the best care possible and want to do anything possible to make sure they are getting it. I want to make that clear. But as I said earlier, it wouldn’t be ethical for me to get involved in trying to influence your husband’s care.
Betty: We really have strict guidelines on giving patient’s advice, Angela, and Charlotte is right. This is really between you and your husband.
Angela: So I guess you’re telling me you can’t help me, even if you can see the doctor is making bad decisions. I mean, how much sense does it make to wake a patient up at night and give him a strong sleeping pill?
Betty: Can I make a couple of suggestions, Angela?
Angela: I guess.
Betty: First, let’s take a look at what happened last night. I can check your husband’s chart to see why he received a sedative last night? There may have been a reason that we don’t know about. I’ll get back to you with an answer. We can also talk to the doctor about recommending a milder sedative if he thinks that would be appropriate, okay?
Angela: I guess that would be a start.
Betty: I would also like to talk about the experiences we have had with other family members in your situation. Would that be okay?
Angela: Sure.
Betty: A medical diagnosis places a lot of stress on everybody involved. I don’t know Logan, but I know that patients often want to feel like they are in charge of their medical care. They may also want to protect their loved ones from having to make painful or scary decisions. Because of this, it may not seem like they are listening sometimes.
Angela: Yes, that sounds like my husband.
Betty: And family members are often feeling pretty helpless in these situations. After all, facing a diagnosis is scary, and dealing with hospitals and medical professionals is a new experience. And so they worry about everything and, when something doesn’t seem to be going right, like when you found Logan sleeping this morning, they want to jump in and make any changes they can think of to try and make everything better. Does that make sense?
Angela: Yes, I understand what you are saying.
Betty: Then I have a couple of suggestions. You might have a talk with your husband about how you are feeling and see how you can work together better. Also, it’s important for you to have support while you go through this. We have a counselor on staff who I could ask to get in touch with you, if you think you might want to talk to him.
Angela: I appreciate your concern. I will give all of this some thought.
Charlotte: Why don’t I walk back to Logan’s room with you. I need to give him his evening meds.
Guidelines for Conducting a Conversation With a Family Member
Here are guidelines to consider when having a discussion with a family member regarding how to communicate with a newly-diagnosed patient.
FIGURE 11-__
A patient surrounded by building blocks, labeled: Clarify roles, Clarify issues, Keep everyone involved, Normalize, Stay tentative, Address needs, Encourage communication, Offer resources.
Clarify roles.
Clarify the roles of the healthcare professionals involved in the conversation. This is especially important when more than one healthcare professional is present.
Clarify the issue.
It’s helpful to begin the conversation with a common understanding of the issue from the perspective of the family member, as well as the patient if he/she is involved in the conversation. This way, everyone involved in the conversation is aware of the purpose of the discussion and the concerns being addressed. Most likely, Charlotte had presented Betty with an accurate description of Angela’s expectations. However, by asking Angela to repeat her request for Charlotte to talk to her husband, as well as what Angela hoped to gain from this request, Betty was able to speak directly about Angela’s expectations, and Angela was better able to receive the message.
Keep everyone involved.
While a healthcare professional in a supervisory role, like Betty, may be called upon to facilitate the conversation, all who play a role with the family member and/or patient should contribute to the conversation. Betty asked Charlotte if she had any comments to make. Given that Charlotte was more involved with Angela than Betty had been, this was a sign of respect for Charlotte, as a professional, as well as an acknowledgement to Angela that Betty understood the relationship between Angela and Charlotte.
Normalize the situation.
Just as patients can benefit from being told that their expectations and concerns are normal under the circumstances, so can family members. Family members may feel that the way that they are reacting to the newly-diagnosed patient is not being understood by healthcare professionals, or that they should be feeling or reacting differently. Reassuring the family member that their reactions are normal serves both to validate their feelings – especially feelings of helplessness – as well as to communicate that the healthcare professional has experience with their situation and is therefore able to offer appropriate guidance. Betty reassured Angela that she and the other professionals working on the floor were experienced with family members under stress, and that she understood how Angela was feeling . Later in the conversation, Betty also acknowledged Angela’s frustrations regarding Logan’s sedation.
Stay tentative.
Family members are feeling helpless, and are fearful about the patient’s well-being. Given that emotions are fragile, they may react strongly to the perception that the healthcare professionals are somehow ‘ganging up’ on them. Betty showed sensitive to Angela’s emotional state by asking her permission to discuss other family members’ experiences and to offer suggestions. Had Angela felt that Betty was attempting to dictate a solution, she most likely would have reacted defensively and the conversation would not have been productive.
Address the immediate need.
Family members may experience one situation that is not to their liking and assume that this is an indication of greater issues. Angela was concerned about whether her husband was being treated by the right oncologist, and as an example of what she viewed as poor care, she related that she had arrived by her husband’s bedside in the morning and assumed that he had been heavily sedated. As the supervising nurse, Betty assured Angela that she would look into how her husband’s nighttime sedative was being administered. This answered Angela’s immediate concern, and was within Betty’s responsibilities to address.
Encourage communication.
Patients and family members will at some point need to communicate better. While healthcare providers may not be in a role to facilitate that communication, they can help by offering encouragement.
Offer resources.
Whenever possible, family members should be offered resources that might provide additional relief. Betty was aware of resources for family members available at the hospital and opened the door for Angela to learn more.
Summary
When a family member is ill, the whole family is affected. Emotions such as fear, sadness, anger, as well as the sense of helplessness, can cause family members to feel a high level of stress, which affects communications between family members and patients. However, when patients and family members are working together, treatment decision-making, compliance, mental health, and other aspects of the patient’s treatment and ongoing care are enhanced. Healthcare professionals can play a role in enhancing communications between patients and family members.