Opening Case Study
Karina had been warned that her smoking might at some point lead to a diagnosis of Chronic Obstructive Pulmonary Disease (COPD). When she received her diagnosis, while she wasn’t surprised, she felt sad, and also guilty, that her smoking had led to this diagnosis. Still, she described herself as ‘somebody who doesn’t give up.’ Karina became informed about her condition and made the decision to do ‘whatever I have to do’ to live a full life.
Karina’s resolution to be a Fighter, however, became to waver somewhat when her respiratory therapist, Josh, and her medical assistant, Sophia, opened the discussion about the kinds of support that Karina might need going forward.
Keep in Mind: What would you be thinking and feeling if you were going to approach the support discussion with a newly-diagnosed patient who was going to have many medical challenges in the future as a result of a medical condition that, realistically, would be progressively debilitating?
“I was prepared for some changes in my life,” Karina said to Josh and Sophia. “I have been having breathing problems for a long time, and had already started to feel myself slowing down. Let’s say I haven’t been hitting the treadmill in the gym any time in recent memory.”
Josh had reviewed the results from the lung capacity tests that her physician had offered, and had been administering breathing treatments with Karina. During this time he had shown her how to use the inhaler that she would be relying on daily, as well as demonstrated how to use the oxygen that Karina would need to have available at home.
“You have responded well to the breathing treatments,” Josh said encouragingly. “And the medication your doctor has prescribed for you has been really beneficial to other patients.”
“But I have to have oxygen at home now, and that means to me that my breathing may get worse over time.”
“We’re always available to you,” Josh said. “We’ll be monitoring you closely and doing everything we can to help you maintain your health. One of the things I want to talk to you about is what you can do to take care of your lungs and what supports we can put in place to help make that happen. Sophia is going to be helping me to put a plan in place for you.”
Josh and Sophia had already had a conversation about Karina’s support at home. They had discussed areas of support that included activities of daily living and compliance. However, as Karina talked, Sophia realized that emotional support would also be an important part of the plan.
Keep in Mind: What specific concerns would you have regarding Karina’s emotional state? She views a future of ongoing decline. Ideally, what would you want to be able to offer to a patient in this position?
While Josh and Sophia have some ideas in mind, they know that Karina is sad and scared about her future, yet at the same time she has indicated that she wants to be a Fighter and remain as independent as possible. They want to encourage her to be as self-sufficient as possible but also to embrace the support that will help her to maintain her physical and emotional health. This can be a delicate balance for the healthcare professional. Karina’s next comment made it clear that Josh and Sophia would have their work cut out for them.
“I don’t know if I am supposed to become an invalid,” Katrina said. “When I read about what happens to people with COPD, I don’t know if I have any choice. I want to stand up to what’s happening to me and make the best of it, at least I do on some days. On other days, this sounds like a lot of work and I wonder if I shouldn’t get all the help I can to a life that is as easy as it can possibly be, and let nature take its course.”
“We have a lot to talk about,” Sophia said.
“But that’s what we’re here for,” Josh added.
Keep in Mind: If Karina was your patient, how would you be feeling at this point? Thinking about what you have learned about body language, what body language would you be looking for in Karina? What kind of negative self-talk do you think she might be using?
Introduction
“I don’t want to be a burden to other people.”
Who likes asking for help? Like most human beings, newly-diagnosed patients do not look forward to being in a position where they must rely on their family members and friends to care for them in any way. Support is associated with images of neediness, perhaps having to have help getting to or from the bathroom, or using the bathroom, or having to be assisted with other activities of daily living like preparing meals or getting to the doctor. While many newly-diagnosed patients have conditions that won’t progress to the point of needing this level of care from others, they may nevertheless want to avoid the topic altogether as a result of where they imagine needing support could lead. Those who have not yet dealt with their fears about the future, or are in denial of their condition, will most likely be even more resistant to the idea of support.
Newly-diagnosed patients are often in the position of needing support. They might need temporary support while they recover from a surgical procedure, or during a lengthy treatment process like chemotherapy, or on an ongoing basis while they modify or reduce activity level. Support may also come in the form of assistance with maintaining compliance with medications or diet. Also, as has been discussed in previous chapters, newly-diagnosed patients may need to plan for emotional support that will be necessary on a short or long-term basis.
Healthcare professionals are often in the position of talking to newly-diagnosed patients about their support needs as they create a treatment plan. To do this effectively, it is necessary to help patients overcome whatever it is that is causing them to be resistant, and to work with them to realistic assess their needs, and potential needs, and to create a viable plan.
Keep in Mind: If you were going to make a list of the kinds of support that newly-diagnosed patients need the most, what would you include? When answering this question, you might want to review the previous chapters for ideas.
Support Needs for Newly-Diagnosed Patients
Newly-diagnosed patients are usually unaware of the kinds of support needs that they might have as they progress with their treatment and begin to integrate their condition into their lives. As will discussed in the next section, perceptions of what support might mean, as well as lack of information, may well be barriers both to considering support options and accepting support. However, before helping a patient to understand and deal with barriers to receiving support, it is useful for healthcare professionals to approach these situations with a broad awareness of the kinds of support newly-diagnosed patients may need to consider, so that they can begin to make suggestions regarding the kind of support that might be needed as well as begin to explore the patient’s perceptions of his/her needs and potential support options.
These support areas are briefly described below. Most likely, newly-diagnosed patients have either not thought about the kind of support they will need, and therefore are not aware of the broad areas that they may need to consider. These support areas will be readdressed later in this chapter, with suggestions for resources to consider.
Psychosocial
The role of psychosocial support has been discussed in coping with the emotions around receiving a medical diagnosis in the all of the previous chapters. Virtually any newly-diagnosed patient can benefit from ongoing support in facing the complicated emotions that arise from the diagnosis onward. Psychosocial support may be provided by healthcare providers during standard day-to-day interactions, by friends and family members, as well as by mental health professionals. Simply having access to someone who can provide a non-judgmental listening ear is a basic psychosocial support requirement.
Activities of Daily Living
Newly-diagnosed patients are generally resistant to the idea of needing help with activities of daily living, because they associate it with loss of normal functioning, a fearful possibility. However, these needs do often arise immediately after surgery, during and after medical treatments, and potentially longer-term, if not ongoing. Activities of daily living assistance may include help with household chores, grocery shopping, meal preparation, transportation to treatments and check-ups, assistance with childcare, are just a few.
Lifestyle Changes
Newly-diagnosed patients may need various kinds of support when making changes to their lifestyle. For example, they may at least temporarily require ongoing professional guidance on making changes to their diet or starting and maintaining an exercise regimen, such as that offered by a personal trainer. On the other hand, a newly-diagnosed patient may also need the support that a ‘buddy’ might provide by offering encouragement and, potentially, the benefit of their own experience. This support may be the necessary ingredient in helping the patient to maintain motivation and focus.
Maintaining Ongoing Compliance
Some medical regimens are more difficult to adjust to and maintain than others, and newly-diagnosed patients may need support in both the early stages of their treatment as well as further on in their treatment. For example, daily injections or medication that must be taken the same time each day may be met with initial resistance. This support may be available through the healthcare team, at least during the initial adjustment phase.
Staying Informed
Motivation to gather information about their condition and its treatment varies widely among newly-diagnosed patients, as discussed in Chapter 7, as does motivation to continue to stay informed on an ongoing basis. Patients, especially those in Fight reaction, may take the time to do this on their own, or they may rely on their healthcare team to keep them informed and/or to suggest relevant information. Newly-diagnosed patients who want to stay informed may need continuing encouragement and guidance.
Staying Connected with the Healthcare Team
Once treatment is completed, or the medication regimen has been adjusted to, patients sometimes have a tendency to ‘slip through the cracks’ and not report for needed check-ups to monitor their progress and report any concerns that they may have. They differ in terms of the kinds of encouragement they need to maintain communication with their healthcare team.
Barriers to Accepting Support
As discussed in the Introduction, newly-diagnosed patients may erect barriers to receiving needed support for their condition. These barriers are described in more detail below.
Figure 8-__
Illustration of a patient holding their hand up as if to say ‘stop.’
Denial
Sherry’s Story
“I’m not going to be sick enough to need any additional help,” Sherry insisted when the nurse in charge of her case, Perry, suggested that she should consider accepting the services of a home health aide while undergoing chemotherapy. “This isn’t going to be a big deal at all. As long as I keep my positive attitude, I’ll be fine.”
“The home health aide will only be coming in to help with the more difficult tasks, like cleaning,” Perry added.
“These are exactly the kinds of things I need to be doing,” Sherry argued. “If I keep active and don’t let myself slack off, I will get through this without any problems.”
Denial can be a strong barrier to accepting help during a time of need. Newly-diagnosed patients often express their denial through insisting that they have to ‘think positive,’ which often means avoidance of thinking, and talking, about anything that might imply that the world as they want to see it may not be realistic. Sherry doesn’t want to accept that her chemotherapy treatments may take a temporary toll on her, and that this toll may result in her not being able to function at the level she normally does. In her case, discussing the possibility that she needs help is admitting to this possibility. In her mind, as long as she stays positive, the scary possibilities will ‘go away.’ Unfortunately, denial can be so strong that newly-diagnosed patients may listen to their healthcare providers only to the point that they begin to hear what they don’t want to hear, and tune them out at that point.
How Denial is Expressed
“All this talk about people helping is just negative thinking.”
“Don’t try to tell me I’m sick. You’re treating me like I’m going to be an invalid.”
“This will all be over before I know it.”
“I want to keep living my life as if nothing bad is happening to me.”
“What you’re telling me doesn’t make any sense.”
Lack of Information
LaToya’s Story
“I heard that most people go on doing what they usually do with this thing. The medicine takes care of it,” LaToya said to Jana, her healthcare professional, when Jana suggested that she may want to talk to a dietician and join a patient group to help her to change her eating habits. “These medications do what your body can’t, and you go on living your life.”
“Have you been reading the information we gave to you that describes your condition and how to best protect your kidneys from further damage?” Jana asked.
“I glanced through it,” LaToya answered. “But I talked to a couple of people who have something like what I have, and they haven’t had any problems.”
Lack of information can be a powerful barrier. Newly-diagnosed patients may listen to individuals who are uninformed, but assume that they are informed and trustworthy, or who tell them what they want to hear. They may also read literature, or visit Websites, with unreliable information. Comprehension may be a factor, if they read trustworthy information but don’t understand, or skip over, important facts. The result is that newly-diagnosed patients who are not informed about the effects of their treatment are more likely to make assumptions about their support needs. Denial is a factor here. Newly-diagnosed patients are more likely to embrace, or avoid, or distort, information when doing so is consistent with their desire to avoid thinking about anything unpleasant.
How Lack of Information is Expressed
“I heard from some other people…”
“I know what I’m talking about. I did a little research on my own.”
“I can’t believe this could be any different than ________ (another condition, perhaps unrelated)
“I trust my judgment on this.”
“I was reading something on the Web…”
Assumed Lack of Financial Resources
Tyler’s Story
Tyler realized that, after his heart surgery, he was no longer going to be able to maintain the hectic pace of his life. He was going to have to start conserving his energy and that would mean adding more work/life balance, relaxing at home, spending time with friends, and cutting back on overtime. He was also going to have to get some help in maintaining his home.
“You’re telling me to cut back on my hours, and that means less money. And you’re telling me I have to hire people to help me with my household chores,” he complained to Javier, his cardiologist’s medical assistant. “That doesn’t make any sense.”
“Have you looked into the options that might be available to you?” Javier asked.
“A little bit,” Tyler answered. “And they are all expensive.”
Finances are always top of mind with newly-diagnosed patients. They see the statements from their healthcare providers and, even if they are not responsible for these costs, they become aware of how much medical care is costing. If they are responsible for co-pays and deductibles, they feel the costs even more directly. If they have to take time away from work for treatment, concerns about job security may arise. And if, like Tyler, they are forced to reduce their work hours, finance-related concerns are increased. Patients may express these concerns directly, as Tyler did. Or they may instead express them indirectly, insisting that they don’t need additional help and/or that they can return to their former routines once they have recovered. Or, they may insist that it is in their best interest to remain active. Patients who are financially responsible for others will feel, if not express, additional concerns about how costs may impact others in their households.
How Fears About Lack of Financial Resources are Expressed
“I have to keep costs under control, so I’m going to handle things myself. I just need to pace myself.”
“My family depends on me. I’ll scare them if I start acting like an invalid.”
“I’ll recover faster if I stay active.”
“There are so many people out there looking to rip off someone like me. I’m better off without them.”
“I’m already feeling stronger. I’ll be back to normal in no time.”
Not Wanting to be a Burden
Vivian’s Story
Vivian took care of her mother as she became older and could no longer care for herself, and brought her mother into her own home during the last two years of her life. When Vivian was diagnosed with chronic fatigue, her medical assistant, Edina, had a conversation with her about the kind of assistance she might be needing going forward.
“I know I don’t need that much care right now, but I have to be honest about what I went through caring for my mother. She needed constant emotional support, and that was hard on me emotionally. She needed me to be an expert on her illnesses so that I could help her keep the doctor informed. And then there was all the day-to-day care as she got weaker. I loved her but she became my life. My kids tell me they are ready to step up to the plate but I don’t know if I want to put them through that.”
“So it sounds like see yourself as becoming a burden to your family,” Edina reflected.
“That’s exactly right. And I can’t let that happen, even if they are telling me I can. I wouldn’t do that to anyone.”
Fear of being a burden to others is common among newly-diagnosed patients, especially those with conditions that will require extensive treatment and/or that might be debilitating over time. This fear is often expressed as a concern that loved ones will take on this responsibility and be inconvenienced by it. However, there are other concerns as well. Patients may fear that family members will become resentful and either continue to care for them but begrudgingly, or decide that they can no longer care for them and walk away. Alternatively, they may have a fear that family members will refuse this responsibility, and that they will have to be faced with their loved one’s lack of concern. If family relationships are tense or strained in any way, patients may fear that relationships would not withstand any additional pressure. Self-image plays a role here as well. Human beings have a sense of pride that is based on being self-reliant, and asking for help from loved ones can be a serious blow to self-esteem, especially for those who have previously viewed themselves as the ‘strong ones’ in the family.
How Fear of Being a Burden is Expressed
“This is going to be too much for everyone to handle.”
“My family is going to resent me if I start making all of these demands.”
“I want my family to have their own lives, not to have to take care of me.”
“I don’t need that much help now, but what about further down the road?”
“I don’t think they will know what to do. I better take care of this on my own.”
Desire to be (Too) Independent
Dave’s Story
Dave has always been described by his friends as having a ‘take charge’ attitude. He was initially angry and fearful when his physician informed him that he had an intestinal blockage and would need surgery followed by a lengthy recovery. However, within a few days, he had completed extensive research online, networked to find the best surgeon in his area and, once satisfied that he had made the right decisions, he scheduled his surgery. It was only at that point that he told his family about his diagnosis.
“I am not a typical needy patient,” he said to Brian, his nurse. “So don’t start telling me what I’m going to need. I’ve already told my wife that she doesn’t need to take any time off from work and I’ve told my kids I won’t need any help from them. I plan to be back to work within a few days.”
“The doctor has indicated that you are going to need a lot of bed rest, for a couple of weeks or more. And from there, you’re strength is going to come back gradually. We think you’re going to need to build yourself up over a couple of months or more. We need to talk about having a nurse’s aide available a few hours a day while you do that.”
“That’s nonsense,” Dave argued. “I don’t need anyone getting in my way and holding me back.”
Dave’s healthcare professionals might call him a classic example of newly-diagnosed patient in Fight reaction. He has taken charge of his healthcare almost from the moment he received the diagnosis. However, for Dave, as with other Fighters, the insistence upon being independent can become extreme, to the point that they develop an unrealistic attitude toward the potential effects of their condition and its treatment. Their independent attitude will ultimately be harmful if they don’t accept the support that they need; it will also make it more difficult for their healthcare team to treat them because they won’t have any assurance that the patient is being compliant to the level that he/she needs to be to support their recovery and ongoing management of the condition. Dave’s independence may be a way of expressing denial of the seriousness of his condition and the effect that the treatment will have on his life.
How a Desire for Independence is Expressed
“I’ll let you know if I need any help.”
“Don’t try to take charge of my life. I know what I’m doing here.”
“If you baby me, you’ll turn me into an invalid.”
“Just let me make the decisions here.”
“The sooner I get back on my feet, the sooner I will have this behind me.”
Keep in Mind: Newly-diagnosed often struggle continuously with helplessness. The helplessness they feel when they are initially diagnosed may be resolved but return when patients are faced with the challenges of treatment, medication regimens and side effects, and changes in routine.
When Patients Want Unneeded Support
While some newly-diagnosed patients may reject needed support, others may instead opt for as much support as possible, much more than they need. This is the result of adopting a disempowered ‘victim’ role. Patients who are in Flight reaction may seek to obtain as much support as possible, due primarily to being so overwhelmed by emotions that they are unable – or at least perceive themselves as unable – to care for themselves. Patients in Freeze reaction may also insist on more support than they actually need because they have given themselves up to wherever ‘fate’ takes them, and have decided that ongoing decline and dependency is all they have to look forward to.
When newly-diagnosed patients see themselves as needing more support than necessary, this perception generally is expressed primarily in terms of activities of daily living. They will insist on the attention of family members and healthcare professionals in performing household chores, as well as with tasks like preparing meals and even self-care. However, this need is expressed in regard to other areas of support as well. Patients in Flight reaction may ask for extensive emotional support, even though the support they seek is more a listening ear than it is an objective voice who offers not only empathy but encouragement and motivation. Patients in Freeze reaction may seek out additional support in communicating with healthcare professionals, or may insist that ongoing communication, includes scheduling appointments and updates, is their healthcare team’s responsibility.
Other Emotions at Work
Other factors are at work in creating an attitude of disempowerment and the expectation of unnecessary support. Newly-diagnosed patients may be demanding support out of a sense of loneliness; this loneliness may have been present before the diagnosis, and now the need for healthcare-related support has also become a way of providing nurturing and socialization that was previously unmet. Patients who are continuing to be overwhelmed by the fear factor, or helplessness, may feel that they will somehow fail, or ‘fall through the cracks,’ if someone is not constantly watching over them. Additional emotional factors include anger. Demanding unnecessary support may also be a passive-aggressive means of ‘getting back’ at whatever, or whomever, the newly-diagnosed patient has decided to blame for their current situation. Complicated psychological issues, which may also reflect unresolved issues that the patient has with family members, may be involved.
Figure 8-__
A photo of a healthcare professional counseling a patient.
Encouraging Self-Efficacy
Helping a newly-diagnosed patient to make decisions about support implies that they are being helped to choose the support that is appropriate to their needs, and that they will be adequately supported, but not to the extent that they don’t make use of their own emotional, intellectual and physical resources. Patients need to be encouraged to accept the support that they need, but also encouraged to not fall into the role of victim. Healthcare professionals are in a key role for helping newly-diagnosed patients to gain a realistic perspective of the support that they, and don’t, need.
Going forward, the discussion of support in this chapter is intended to help healthcare professionals to work with newly-diagnosed patients to assess their support needs so that they can be supported in a way that is consistent with their needs, their preferences, and the resources that are available for these purposes. Consequently, the information and guidelines presented will take into account situations in which the patient may be resistant to support as well as those in which the patient is demanding more support than necessary.
Assessing Openness to Receiving Support
Exploration around a newly-diagnosed patient’s openness to receiving support really begins with listening to the patient’s perspective on their health situation and how it is impacting their life. Generally, this discussion will revolve primarily around activities of daily living because patients are often top of mind most concerned about maintaining a much of their previous routine as possible. The discussion will also include – possibly as a result of prompting from the healthcare professional – patients’ perceptions of their ability to cope emotionally, stay informed, and remain compliant.
The key word in this discussion is listening on the part of the healthcare professional. This sets the tone with newly-diagnosed patients that their wants and needs are being considered foremost in any planning for ongoing support. This provides a sense of control at a time – and with a topic – when feeling in control is important. Through listening, the healthcare professional will have the opportunity to gauge the patient’s willingness to consider support, get a feeling for any resistance or other barriers to support that the patient might have, as well as assess if the patient is feeling helplessness to a level that may result in wanting much more support than is warranted.
What Are You Going to Need To Be The Best Possible You?
Decisions around support can be complicated and, realistically, newly-diagnosed patients may need support in certain areas of their life, such as activities of daily living and compliance, that may initially resist. In discussions with patients around their support needs, healthcare professionals often begin with a discussion of the details, including specific needs and suggested solutions. While this approach may appear to be straightforward and efficient, there is a risk that this approach may be confusing to patients. First, they may not immediately understand the connection between the overall goal of support and the suggestions being made by the healthcare professional. For example, patients may assume that the healthcare provider is attempting to make them ‘sicker’ than they are or is otherwise attempting to take control of their lives. Conversely, patients may embrace the patient role and want as much support as possible.
The optimal way to introduce the support discussion is to begin by inviting the patient to collaborate in this discussion, in other words, to help in creating the support plan. The best way to do this is to start on a positive note, with the question: ‘What are you going to need to be the best possible you?’ This question subtly implies to patients that:
- Support is directed toward wellness – being as ‘normal’ as possible – and not toward being ‘sick’ or in any way encouraging a victim role
- They are being tasked with helping to set the ground rules for support and their input is valued by the healthcare professional
- The discussion will be focused around choosing solutions that are most in line with patients’ preferences
Beginning the support discussion by providing an opportunity for the newly-diagnosed patient to talk first also provides the healthcare professional with the opportunity to gain an understanding of how the newly-diagnosed patient views the prospect of needing support in some form. In the process of answering this question, newly-diagnosed patients will express their hopes, their fears, and any barriers to support. Knowing this in advance will help to guide further discussion.
Keep in Mind: The desire to be ‘normal’ is a key motivator for newly-diagnosed patients. By asking the question, ‘What will it take to be the best possible you?’ the healthcare professional is offering the patient the opportunity to collaborate on creating the means of maintaining as much of their standard routine as possible.
The Role of Self-Talk
Newly-diagnosed patients most likely have images around what it means to be ill and in need of assistance from others. They may have faced health problems in the past, or be currently facing other health challenges, or they may have observed, or been a caregiver for, family members or friends in this situation. Portrayals of healthcare crises in the media may also be on their minds. These images all contribute to their self-talk around support. Self-talk around support can be accompanied by some familiar or not-so-familiar emotions. These emotions may include anger about past responsibilities for other, or disappointment when others didn’t come through, or guilt about not been helpful to someone in the past, or having already had to depend on assistance from others. Newly-diagnosed patients also worry about contributing to the fears that their loved ones already have regarding their condition.
Patients who identify with their negative self-talk about support can be hard to reach unless their self-talk is addressed. As a healthcare professional, it can be productive to encourage patients to express their concerns regarding support, and then assist them by identifying the examples of negative self-talk that emerge (this process is described in more detail in Chapter 2). One contributor to negative self-talk is lack of information, which results in either-or thinking. Newly-diagnosed patients may approach the idea of support with the expectation that all support will have to be provided by family members. Consequently, the healthcare professional can help to dispel this fear, and counter the negative self-talk, with education regarding the kinds of support options that are available.
Figure 8-__
An illustration of a patient surrounded by thought bubbles. On one side, negative messages and, on the other side, positive messages (adapted from the text below).
SIDEBAR: SELF-TALK
The prospect of support can trigger a range of negative self-talk messages. These include:
I am going to be a burden to my loved ones and they will end up resenting me.
I haven’t been helpful to other people. What right do I have to ask for help?
Everybody around me wants to turn me into an invalid
I can’t possibly get the kind of support that I am going to need. If it even exists, I won’t be able to afford it.
Finally, everybody realizes how much help I need and they are going to make sure I get it.
Antidotes to negative self-talk include:
There are a lot of different options for support and I am going to find the ones that make the most sense to me.
I don’t have to settle for being an invalid. I am going to get help in maintaining as much of my normal life as possible.
Asking for help doesn’t mean I am helpless.
The people who love me want to see me remain as strong as possible and they want to participate in making that happen.
Figure 8-__
Photograph of a patient frowning and looking away from a healthcare professional who is trying to communicate.
SIDEBAR: BODY LANGUAGE
Expressing Barriers to Support Through Body Language
Newly-diagnosed patients who are resistant to support may show this through:
- Looking away
- Stiffness
- Aloofness
- Talking too loud
- Refusing to communicate
- Frowning
Expressing the Victim Role
Patients who perceive themselves as helpless may express this through body language such as:
- Hesitancy
- Talking softly
- Slumping forward
- Speaking haltingly
- Nodding to frequently
SIDEBAR: EDUCATIONAL MOMENT
While newly-diagnosed patients will benefit from a discussion about their support needs, they may also benefit from brief reminders of areas in which they will need support, as well as potential support resources, as the opportunity arises. For example, when a patient expresses concern regarding how a medication will be administered at home, or a bandage will be changed, the healthcare professional could reassure the patient that they will not be expected to do this themselves and that support resources are available.
Locating Resources for the Key Support Areas
Earlier in this chapter, the key areas of support that newly-diagnosed patients may need to have available were described. Below are some suggestions for finding appropriate resources.
Figure 8-__
An illustration with the word ‘Resources,’ with arrows to the key resources identified in the sub-headings below.
Hospital/Clinic Based Resources
Newly-diagnosed patients whose condition has required hospitalization most likely have access to the social work department of the hospital/treatment center where they have been treated. Social work departments are staffed by individuals who are well-versed in local community resources, including assistance with finances, nursing and personal care, support groups and other emotional support. Social workers are trained to evaluate patients’ needs and to make connections with appropriate resources in the community. Case managers within the department that is treating the patient may also be available to provide these functions. Hospitals have their own systems in place for making referrals with the social work department, whether it is patient-initiated or initiated by the physician or other healthcare professionals.
Internet
As discussed in Chapter 7, ‘Encouraging Patients to Gather Information, the World Wide Web has a wealth of health-related information, including Websites dedicated to patient support-related topics and community resources. Guidelines for healthcare professionals in using the Web is similar to those for patients. Some Websites are more trustworthy than others, depending on the organization behind the Website. There are Websites that provide reliable information and others that have an agenda that might include selling a product or service or promoting a viewpoint that may or may not be mainstream. However, taking a moment and using a search engine to locate resources relevant to a patient’s needs can be highly productive as well as beneficial to the patient.
Community Organizations
Many, many community organizations exist with the goal of helping individuals in healthcare situations. In larger communities, these organizations may be focused on specific conditions, such as diabetes, HIV, or cancer; often they are local chapters of larger organizations such as the American Diabetes Association or the American Cancer Society. These organizations may offer services that include trustworthy information, access to professionals who can answer questions, counseling, support groups, referrals to services like help with chores and meal delivery, and financial grants. A careful search on the Internet will yield the Websites of these organizations; however, the local yellow pages, the community pages of your local newspaper, as well as local resource guides, will also provide contact information. It can be helpful for a healthcare professional to make the first contact with these organizations to gain an understanding of the services they offer and to learn the best way to make a referral, understand any costs that might be involved, clarify eligibility requirements, and potentially to obtain the name of an individual for the patient to speak with. This will save time and frustration for patients, who may be hesitant to call and/or may become easily discouraged if they are not helped immediately.
Support Groups
Support groups are available through hospitals and treatment centers, local organizations, churches and synagogues, as well as through patient advocacy organizations. The Web and the local telephone directory, and you local newspaper, are all recommended starting places for locating support groups. These groups can provide not only emotional support, but also information and recommendations for other services. Newly-diagnosed patients may embrace support groups, or they may feel that they will feel exposed in this setting, or that they will be frightened or discouraged by other patients’ experiences. It is recommended that that the healthcare professional explain the role of support groups and describe the potential benefits to the patient, keeping in mind that patients may be resistant, at least initially.
Brainstorming with the Patient
Newly-diagnosed patients often have access to numerous support options in their own communities and networks but not be thinking about them. For example, a neighbor’s child might be interested in making some extra money mowing the lawn or helping with some household chores. A group of friends might be recruited to each make one meal per week. A religious institution, or a club or organization, that the patient is involved in might be willing to help out in some way. An objective friend or family member might be a good person to partner with on helping with ongoing compliance with medication regimens, or could be an exercise partner. Providing the patient with some examples, as well as encouragement, might lead to brainstorming that leads to productive results. Newly-diagnosed patients are often initially reluctant to thinking of their social circle in terms of support. Consequently, the first discussion of this option may not be as productive as the discussions that follow, because the patient may need time to process this idea and gain perspective in terms of seeing the benefits, and acknowledging their own need as well as the willingness of others to step in.
A Caution About Making Support Recommendations
Caution should be used in making recommendations for a variety of reasons. For one, newly-diagnosed patients may assume that a recommendation of a resource is also an endorsement, and will be disappointed and angry if they have a negative experience. Trust may be impacted as a result. Recommending too many resources may be confusing to the patient. If a patient is harmed in any way as a result of a referral made by a healthcare professional, there may be legal implications.
It is recommended that healthcare professionals be well-versed in the policies of their organization (office, department, hospital, clinic) before making referrals to patients so that they are aware of any restrictions regarding what kinds of resources can be presented to patients, if at all. Some organizations maintain an official list of support resources and only these can be recommended to patients. It is also a good idea to clarify with patients that providing resources does, or doesn’t, mean that the resource is officially approved by the healthcare professional or his/her organization. Choosing appropriate support resources, and presenting them in a way that the newly-diagnosed patient will understand, is also important.
Networking informally with other healthcare professionals can also be helpful in choosing appropriate resources. For example, support groups that are well-established often develop a ‘reputation’ in terms of the approach and the kinds of topics that are discussed. Patients can be helped immensely by support groups, but they can also become upset or otherwise ‘turned off’ by the environment that they encounter. Asking other trusted healthcare professionals for recommendations, or advice on which support groups may be less effective for specific patients, can make a large difference in how it is ultimately experienced by the patient. Networking can be useful in obtaining suggestions and recommendations for other support resources, such as home healthcare agencies, as well.
Figure 8-__
A photo of two healthcare professional leaning forward and actively listening to a patient.
Initiating Collaboration on the Support Plan
As discussed previously, collaboration is the key word when working with newly-diagnosed patients on the support plan. This begins when the healthcare professional consciously creates an environment in which the patient is assured that his/her feelings, concerns, needs, and preferences are valued. This environment is created both verbally and nonverbally.
Keep in Mind: Consciously or subconsciously, patients make assumptions about our intentions based on how we present ourselves to them through our body language. When discussing support, healthcare professionals sometimes encounter patients who disagree with their perceptions and recommendations. How would having conflict with a patient potentially affect your body language?
Be aware of your body language.
Newly-diagnosed patients are highly sensitive to what they perceive is the attitude of professionals with whom they come into contact. Conveying an attitude of openness to collaboration begins with the body language of healthcare professional. Consciously and subconsciously, patients are reacting to the even the most subtle cues which, to them, that they are being considered as active participants in any decisions being made. It is not possible to continuously monitor one’s behavior, or to have control over the perceptions of others, however, following some basic guidelines for body language can be effective in conveying an attitude of collaboration.
What not to do:
- Avoid eye contact, which may be perceived as lack of honesty
- Hold a notebook in front of you, which may imply that decisions have already been made
- Stand when the patient is sitting
- Sit with your arms fold across your chest
- Frown or appear distracted
What to do:
- Maintain eye contact
- Smile, convey optimism
- Sit across from the patient with an open posture
- If holding paperwork, don’t appear to be hiding it
- Nod when the patient is speaking to demonstrate active listening
Reassure the patient that his/her control is not being taken away.
Healthcare professionals are often over-scheduled and have a limited amount of time to spend with each patient, especially on non-direct care issues that may seem unnecessarily time-consuming. Furthermore, after having dealt with issues such as support with numerous patients, it is only human to assume to know a patient’s needs as well as the likely solutions before even meeting the patient. However, if patient’s feel that the healthcare professional is providing a ‘cookie cutter’ solution to their needs, and dictating how their needs will be met, this will be interpreted as an attempt to take control and may be met with resistance as well as lack of cooperation. Additionally, it is possible for healthcare providers to make wrong assumptions about support needs or to miss important details if not taking time to listen to the patient, and err on the side of too much, not enough, or the wrong support.
What not to say:
- Here’s what we have planned for you.
- I’ll go through the schedule for you.
- We know exactly what you need.
- It’s all been set up for you.
What to say:
- We have some suggestions for help with a few things so that you can conserve as much of your strength as possible for getting better.
- I’d like to start with where you think you might need some help.
- Choose the activities that are most important to you, and then let’s work together on getting you some help with the other ones.
- I’m here to help put together a realistic plan for making sure you can do the best you possibly can going forward with your condition. That’s my goal.
Figure 7-__
Illustrations showing the healthcare professional working together, e.g. going over a schedule, might be effective here.
Be realistic by positioning the assistance appropriately.
The support discussion should begin with an overview of the physician’s recommendations as well as any additional recommendations that the healthcare provider might have. The patient may, or may not, already be aware of some of these recommendations based on discussions with the physician. Regardless, the newly diagnosed patient attempt to ‘bargain’ with the healthcare provider regarding the level of support that they think they need, based on unrealistic expectations. For example, a newly-diagnosed patient’s optimism can become realistic regarding length of recovery time or level of independence. The Fight reaction may be at work here, but so may denial of the severity of their situation. On the other hand, their expectations can also be too low if in the grips of emotions like fear. When confronted by patients who are not realistic about their support needs, healthcare professionals may momentarily appear to agree with the patient’s assessment of their needs as a means of avoiding an uncomfortable situation or somehow upsetting the patient. While this is understandable, the risk is that the newly-diagnosed patient may consequently have an unrealistic assessment and expect their support plan to be based accordingly.
Instead, it is recommended that the healthcare professional provide the patient with a realistic view of the areas of support that are recommended and why. It may be helpful to review the treating physician’s comments on the patient’s chart, or even to ask the physician to speak with the patient. It’s also important to distinguish between short-term and long-term support recommendations, if there is indeed a difference, and to review the benefits of receiving appropriate support. Reminding the patient that he/she will have input into how support is delivered will also be helpful in softening any disappointment or frustration.
What not to say:
- Don’t worry, you probably won’t need much help at all.
- I am sure you can have as much home health care as you want.
- Let’s be optimistic. Most patients are on their own in no time at all.
What to say:
- You will need this help during your treatment and for awhile afterwards, until you regain your strength.
- We will continue to evaluate how you are doing. We will leave the support in place only as long as you, and your treatment team, think you need it.
- Most likely, you will need to have this support moving forward with your condition.
- If you take time to rest and recover, you’ll have a better chance of getting back to normal earlier.
Figure 8-__
A photo of a healthcare professional with a patient who is making a list.
Begin by making lists. Let the patient be the scribe.
Because they are most likely new to the culture of healthcare, newly-diagnosed patients take their cues from healthcare professionals in what is expected of them and what is appropriate behavior. Making a list during the support discussion can imply to the patient that the meeting is intended to be a working session, that no plans are yet in place, and that their input is desired. Consequently, it may be helpful to provide the patient with a sheet of paper to take notes on, encouraging him/her to jot down any questions or ideas that they might have, while the healthcare professional maintains their own notes as well. During the meeting, it will be useful to compare notes as well as to ask the patient if he/she has written down anything they want to discuss. In additional to providing a sense of control and involvement, this exercise will help the patient to maintain focus.
What not to say:
- I’ve made some notes for us to go over.
- I’ll go over my ideas and you might want to jot down a few notes.
What to say:
- I’m going to give you some paper and a pen. If you want to jot down any questions or ideas that you have as we go along, please feel free.
- Why don’t you start by making a list of some of the resources you think might be helpful to you.
- I’d like to know what you view as the kinds of support we need to put in place for you while you are in treatment. If you want to, you can go ahead and sketch out what you would see this looking like, and then we can talk.
- I have some resources I can suggest, but you might want to do some brainstorming on your own, starting with getting some help with household chores.
Keep in Mind: Extreme patience may be required in working with patients to recognize where they may need help, as well as where they can remain self-sufficient. Compassion is key. How would you be feeling in this situation?
Make suggestions but assure the patient that he/she has choices.
Newly-diagnosed patients take the recommendations of their healthcare team seriously. While this can be positive, there are times when the patient might consent to support that he/she is not comfortable with, or doesn’t agree is needed. For example, a patient may agree to going to a support group when he/she doesn’t have any interest, or may agree to a check-up schedule that he/she isn’t sure is realistic. While patients may need suggestions from their healthcare team, they will be much more compliant with a support plan that they feel is relevant to them specifically and that they are comfortable with. To this end, it is recommended that the healthcare professional provide suggestions and discuss the options with the patient to understand any concerns or confusion, as well as preferences.
What not to say:
- Here’s what I’ve got for you.
- I can tell you what I would do in your situation.
- I’ll tell you what other patients have done.
What to say:
- We are giving you some suggested resources, but it is up to you to decide which ones you want to choose.
- We want to help you put support in place that meets your needs. I have some ideas for you, but you are the ultimate decider in terms of how this all works.
- I’ve given you a few ideas, now let’s talk about each one.
- It’s important for you to feel comfortable with the support that is put in place. After all, this is all about helping you.
Getting Families Involved in Support
Communications with family members and other caregivers is covered in depth in Chapter 11, ‘Communicating with Family Members and Caregivers. However, for the purposes of this chapter, it is important to emphasize the critical role that family members play in supporting newly-diagnosed patients. Patients do not always want their families involved in providing support, for reasons that include fear of being a burden or, on the other hand, not trusting family members to be adequate to the task. Family members may also resist this role, for the same reasons. Realistically, however, if the newly-diagnosed patient lives with, or is in close proximity to, family members, they are involved in his/her healthcare. Most likely, family members are involved soon after the patient receives the diagnosis, offering emotional support, communicating with the treatment team, and educating themselves on the condition. If the patient is in Flight or Freeze reaction, the family may be more actively involved than if the patient is a Fighter.
Figure 8-__
A healthcare professional sitting with a spouse and a teen-age child.
In regards to the involvement of family, the right of the newly-diagnosed patient to be in control is an important consideration. Families may be perceived by both the patient and the healthcare team, as ‘taking over,’ e.g. insisting on being involved in discussions around support, dictating how it should be delivered, and by whom. While this can initially feel overly-aggressive, and even hostile, to healthcare professionals, it is important to keep in mind that over-involvement can arise out of the sense of helplessness that families experience when a loved one has a medical diagnosis. The sense of helplessness may also result in family member’s disempowering the patient by encouraging him/her to allow them to do more than is needed. Keeping this in mind may help to keep the family’s involvement in perspective.
Where possible, it can be useful to gently remind that newly-diagnosed patient that they are in charge of their support, and that others will make decisions only if they choose to allow them to. Healthcare professionals can also offer to answer questions that family members may have – with the patient’s written permission – and offer the objective perspective that family members may need.
Healthcare professionals play a key role in helping to organize the patient’s ongoing support, yet it is also advisable not to become involved in family conflicts. If the family makes recommendations or choices that are not advisable for the patient, the healthcare may need to refer to policy, and enlist the physician, to assure that the patient’s interests are met.
Figure 8-__
Josh and Sophia, healthcare professionals, talking with Karina, a patient.
Rx: Conducting the Support Discussion
Karina, the recently-diagnosed COPD patient from the beginning of the chapter, sat down with Josh, the respiratory therapy technician, and Sophia, the medical assistant, to begin planning the support that she might need as she begin this new chapter in her life.
Sophia: Now that you have a treatment regimen set up, Josh and I want to talk to you about making plans for making sure we put in place any support you need. Okay?
Karina: I don’t think I have a lot of choices here. I know I’m sick. But I also know I am not going to start living like an invalid unless I become one.
Josh: We don’t want to make you weak, Karina. We want to help you to stay as strong as possible.
Sophia: Josh is right, Karina. This is about strength, not weakness. Can we think of that as the starting place for what the three of us agree on?
Karina: Sure, we can start there.
Josh: Great. So I would like to ask you to do a lot of the talking, while Sophia and I listen. Maybe you could start by answering a question. What will it take to make you the best person possible?
Karina: That’s a big question. Other than making my COPD go away, I would say making sure I am breathing as well as possible, handling the things I need to do every day at work and at home to keep my life going, being a good wife, and I guess just keeping my chin up on the bad days. That’s a lot, right?
Sophia: It may sound like a lot, but I think this is all doable. I am going to give you a sheet of paper and a pen. If you don’t mind, I’d like to start making a list as we talk. You can jot notes, maybe list any resources you can think of. We’ll do the same thing. And then we’ll see how we net out. Okay?
Karina: Yes, I can do that.
Josh: You mentioned that you want to breathe as well as you can. I certainly want you to do that. What kind of help do you need to make that happen?
Karina: A couple of things come to mind. Coming to my appointments. Taking my medications. And I guess not pushing myself too hard.
Josh. Let’s start with not pushing yourself too hard. I know Sophia is going to want to have some input here, too. So Karina, what will it take to help you with that one?
Karina: Don’t start telling me that I can’t go to work or that I have to hire a housekeeper. I take care of my own home. And we don’t have money for hired help.
Sophia: I wasn’t going to make that suggestion, Karina. But I am wondering if there are some things around the house that you want to keep doing and some things that you can get help with. Remember, you said you wanted to stop pushing yourself so hard. Any ideas?
Karina: Well, maybe I shouldn’t be doing all of the heavy cleaning on my own. I have to say it really wears me out. The doctor also told me I shouldn’t be doing that anymore.
Josh: What do you mean by heavy cleaning?
Karina: Oh, vacuuming and shampooing the carpet, mopping, washing the windows.
Things like that.
Sophia: That’s a good start. Now, is there anyone who could help with that?
Karina: Well, my daughter Kathy offered to come home from college once a month and spend a few hours helping me. She probably wouldn’t mind. And my husband is offered to do more of this.
Josh: Fantastic, Karina. We’ve already got some of your support plan in place. See how easy this is?
Karina: I guess it wasn’t so bad.
Sophia: Now, what else can we do to make sure you conserve your energy for what’s really important in life?
Josh and Sophia continued to talk with Karina about her activities of daily living, and then moved on to discussing areas that included maintaining a healthier lifestyle, maintaining compliance, and coping with emotions. They formulated a list of the key areas and, based on Karina’s ideas, as well as suggestions from Josh and Sophia, they created a support plan.
Sophia: Now that Josh and I have discussed your support needs with you, and we’ve agreed on the best ways to get them met, I’d like to go over them with you. Feel free to ask me any questions you have or let me know if there is anything you aren’t sure about. And then, we’ll type up the plan so that we all have a copy of it. Okay?
Karina: Sounds good.
Josh: It’s great to know that, at this point, we have a plan for keeping you at your best. Remember that this is a working document. When you stop in for your appointments, one of us will review it with you and, if anything isn’t working, we’ll find another solution together. Don’t forget that we’re a team.
Find a common ground.
At the beginning of the resource discussion, a newly-diagnosed patient may indicate some resistance, or helplessness, or otherwise indicate that he/she is not necessarily going to readily embrace the recommendations of the healthcare team, or even be willing to have the discussion. In these situations, if the healthcare professional is perceived as forcing his/her will on the patient, either indirectly or directly, the discussion will most likely be unproductive. Instead, it is recommended that the healthcare provide begin by focusing on a shared goal and using that as a starting place for further discussion. In this way, the support discussion is similar to a negotiation with each party expressing potentially different opinions while staying focused on a common goal. In the example above, Sophia and Josh sensed that Karina was resistant and, rather than attempting to sway her opinion in their favor, they took a step back and found a common ground.
Make a list of key needs.
Given the many issues that a newly-diagnosed patient is confronted with, any thoughts about the future may be overwhelming; this is further complicated by the many unknowns around the condition itself and how it might or might not affect daily life as the patient has known it up until that point. Consequently, the future may seem so uncertain that discussing it feels like a waste of time, if not frightening. Josh and Sophia used the list to provide a focal point to the discussion and helped Karina to feel like an equal partner in her own care, since she was creating her own list. Psychologically, breaking down a large, undefined task into smaller tasks, and attaching a solution to each task, served to make it feel less overwhelming, and more doable, to Karina. It might be helpful to organize the list in sections, with each section dedicated to alternatives for each area of support, like household responsibilities, reducing stress, maintaining compliance, etc.
Ask for patient input.
One of the best ways to help the patient feel in control is to consistently solicit his/her input. Josh and Sophia made it clear from the beginning that they wanted to know what Karina’s thoughts were, and that her input was both needed and valued. One aspect of Karina’s fear about the future with her condition was that other people would be dictating how she would be living her life day to day. Therefore, soliciting her input helped to put some of those fears to rest. Furthermore, Karina offered valuable ideas and, because she was involved in the decision process, she would most likely be more inclined to be compliant.
Make suggestions.
The opinions of healthcare professionals are respected by newly-diagnosed patients, in spite of their disagreements. Patients understand that their training, and experience with patients in similar situations, make them uniquely qualified to offer ideas that they themselves are not aware of or have not considered. The key is to offer ideas as suggestions to consider and not as dictates that the patient must follow. While many aspects of medical care are not-negotiable with the patient, when planning support, there are often numerous options that may all help to solve the problem.
Formulate the best possible approaches.
Much of the support planning process will involve brainstorming, with the patient, and the healthcare professionals, offering alternatives. Once needs and potential solutions have been covered with the patient, then the next step is to further narrow down the list to the best alternatives. Josh and Sophia would have gone through this process with Karina to create a workable plan. Some further negotiation might be required to agree upon the approach that will best assure that the patient will be supported in a way that meets medical objectives but that is also realistic and comfortable for the patient.
Figure 8-__
Josh and Sophia watching as Karina makes a telephone call.
Don’t let patient leave until committed and have made initial arrangements.
Once the support plan has been agreed upon with the patient, it is recommended that the patient be encouraged to take action immediately. For example, it can be helpful to set dates with the patient, e.g. when children will begin helping with certain tasks, when they will meet with a personal exercise trainer, or when they will schedule an appointment with a counselor. It may be useful to set a date to review progress so that, if course correction is needed, the patient can be assisted in developing new alternatives. This will provide incentive to the patient to take action as well as to prevent discouragement.
Summary
Newly-diagnosed patients may have a range of support needs as they begin treatment and, depending on their condition, learn how to live with their condition. The right support is an important aspect of this process. By partnering with patients, healthcare professionals and patients can assist each other in choosing the support options that will best meet the needs of the patient as well as enhance ongoing compliance.
WORKSHEET: Support Needs and Resources Worksheet
Task Support Resource
Available (name of resource)
Physical
[ ] Cooking ________________
[ ] Cleaning _______________
[ ] Shopping _______________
[ ] Getting to the ________________
Doctor
[ ] Walking ________________
[ ] Taking Medications ________________
[ ] Self-care ________________
[ ] Childcare ________________
[ ] Following a diet ________________
[ ] Following an
exercise plan ________________
[ ] Changing bandage ________________
[ ] Giving injections ________________
[ ] ______________ _______________
Financial
[ ] Writing checks ________________
[ ] Managing finances _______________
[ ] Insurance ________________
[ ] Making household ________________
decisions
[ ] Other business ________________
[ ] Job issues ________________
[ ] ______________ ________________
Psychosocial
[ ] Daily companionship ________________
[ ] A listening ear ________________
[ ] An occasional ________________
check-in
[ ] _____________ ________________
Spiritual
[ ] A group to attend ________________
[ ] Someone to call ________________
[ ] Someone to visit me ________________
[ ] ________________ ________________