Opening Case Study
Marcus remembered that his oncologist, Dr. Morgan, described his pancreatic cancer diagnosis as “one of the most lethal.” He didn’t remember much after that, except that she emphasized that the healthcare team would do everything possible to keep him comfortable, and that he would survive at most another year.
At the age of 42, that was one of the last things Marcus expected to hear, especially when he wasn’t really feeling very sick. “Are you sure this is happening to me?” he had asked her.
“I’m so sorry to have to give you this news,” Dr. Morgan had answered. “But I’m sure.”
Keep in Mind: Being informed that they have an untreatable medical condition is most likely the darkest moment that the patient has ever experienced in his/her life. If you were in this position, what thoughts, images, and feelings would you have?
Dr. Morgan sat with Marcus and informed him of her plans for treating his cancer. She used words that were familiar and frightening to Marcus, including ‘palliative care’ and ‘hospice.’ Marcus tried to listen but all he could think about was that his life was coming to an end, much earlier than he expected it to, and how afraid he was.
Marcus was an attorney working in the public defender’s office. He was active in his community. He was active in community theater and was spearheading the creation of an after-school mentoring program for inner-city children. As Dr. Morgan talked, Marcus couldn’t help but wonder what would happen to the people who depended on him at his job and in his volunteering activities. It just didn’t seem fair.
“I am prescribing some chemotherapy as part of your palliative care,” Dr. Morgan said. “If you don’t have any questions for me right now, I would like to ask you to meet with our nurse who coordinates patient care, Ellen, and the IV therapist, Sarita. Would that be okay?”
“Sure,” Marcus answered.
Keep in Mind: As a healthcare professional, you could be called up to meet with a newly-diagnosed patient whose condition is terminal. What concerns would you have as you prepared to meet with this patient? What would you want to be able to accomplish with this patient from both a medical and emotional perspective? What words would you have for this patient?
Sarita and Ellen entered the examination room. They introduced themselves to Marcus, and sat across from him.
“How are you doing?” Sarita asked.
“Not so great today,” Marcus answered. And then he brought his hands up to his face and began weeping.
“Take your time,” Ellen said. “It’s okay.”
Ellen handed Marcus a box of tissues, and they sat quietly as Marcus cried.
Keep in Mind: Are there any words that might be effective in this situation?
Figure 13-__
A photo of Sarita and Ellen sitting with Marcus.
Introduction
“The doctor says things don’t look good.”
While advances in modern medicine have resulted in breakthrough treatments for medical conditions that were once catastrophic, such as serious injury and serious illnesses like cancer, heart disease, and HIV, to name only a few, the news that patients receive from their healthcare professionals is not always optimistic. Sometimes, the prognosis is terminal. With a terminal diagnosis, additional issues are introduced which can be challenging to patients, loved ones, and caregivers.
As humans, healthcare professionals have their own individual emotions, beliefs and experiences regarding the end of life – fears, hopes, and spiritual beliefs – which they bring to situations in which they encounter patients who are facing a terminal diagnosis. Fears about death can make it difficult or impossible to have these discussions. On the other hands, strong personal convictions regarding how one should face death, and beliefs about the life after death, can also affect the way in which a healthcare professional might approach end-of-life discussions with a newly-diagnosed patient. The spiritual dimension was discussed in Chapter Ten.
When faced with the news that their diagnoses are terminal, newly-diagnosed patients have emotions, beliefs and experiences which are unique to them as individuals, and which will influence how they react to the news that they will not survive. For example, the initial shock of the diagnosis may be intensified when it is also terminal, and the emotions, or lack of emotion, that follow the initial shock may be that much more intense. These may coincide with some of the healthcare professionals with whom they come into contact, and they may be quite different from others.
It is recommended that healthcare professionals be aware of their own beliefs around the end of life, as well as their own level of comfort level, and limitations, so that when called upon to reach out to a patient facing a terminal condition, they are able to be as effective as possible. Consequently, it is not the purpose of this chapter to provide extensive an in-depth discussion of end-of-life issues or extensive guidelines for helping patients to navigate this process. Instead, the purpose of this chapter is to highlight the issues that may arise for both healthcare professionals and patients when a patient receives a terminal diagnosis, and as well as to introduce suggestions for helping patients during the initial days and weeks after the diagnosis.
Figure 13-__
An illustration of a healthcare professional surround be thought bubbles labeled with subheads from the section below, including ‘My beliefs?’, ‘Comfort level?’, ‘Resources?’, ‘Policies?’, ‘Knowledge?’
Healthcare Professionals and Patients Facing the End of Life
When working with newly-diagnosed patients who are facing the end of life, healthcare professionals will be focused primarily on medical issues, as they are with newly-diagnosed patients in general. However, while learning that the condition is not treatable introduces a range of emotional and spiritual issues for patients, healthcare professionals working who come into contact with terminally-ill patients may find that this experience brings up memories of past experiences, as well as their own fears and questions about death, that may be uncomfortable and confusing. It is normal to have these reactions. However, it is recommended that healthcare professionals under take their own ‘inner work’ as they prepare to work with terminal patients, so that they can be as effective as possible in helping these patients to cope with their reactions to the diagnosis, as well as recommend resources that will be useful going forward.
The follow are suggestions for healthcare professionals as they prepare to work with patients facing the end of life.
Define your own beliefs about death.
It is human nature to include death and dying – especially one’s own death – among those topics to avoid talking or even thinking about. As with patients, some healthcare professionals have strong beliefs about death, which may or may not be grounded in spiritual or religious teachings. It is not necessary to provide religious teaching to patients facing death; this would be discouraged in most healthcare settings. Nor is it necessarily important to have a religious background to be able to talk about death. Many individuals are unsure of the meaning of death from a spiritual perspective. What is important, however, is being comfortable with one’s own views about death, even if this means being comfortable with ‘not knowing.’
Healthcare professionals who have taken time to define their own views are better able to listen to the patient’s perspective because they will be less likely to be uncomfortable with questions and viewpoints that they haven’t considered in their own lives.
Be aware of your own comfort with discussing death.
Death is not an easy subject to talk about. Some healthcare professionals are naturally comfortable with talking about death, and find themselves reaching out to newly-diagnosed patients and, in turn, finding that patients gravitate toward them as end-of-life issues arise. Others are not. Healthcare professionals can gauge their own comfort levels and know their own strengths and discomfort around the topic of death. When these discussions arise, these are times to ask other healthcare professionals, who may be more comfortable with death, to step in. This comfort level, as well as the knowledge of what to say to patients facing death, may grow with experience.
Understand appropriate boundaries.
Healthcare professionals may react to a newly-diagnosed patient dealing with the emotions and questions around death with a sense of helplessness which may, in turn, have negative consequences. One of these consequences is to be come as emotionally overwrought as the patient is, which interfere with the patient’s emotional recovery. Another is to want to step in and take care of the patient, which might include making decisions that the patient needs to make and becoming over-involved in family situations. Also, healthcare professionals with strong religious beliefs may attempt to instill these beliefs in the patient. While the intentions behind these actions be well-meaning, they can result in emotional damage to the patient as well as damage to the therapeutic relationship.
Healthcare professionals who are not clear on appropriate boundaries are more likely to approach end-of-life situations with hesitation because they are not sure of what they can and should do for these patients and what they should avoid. By maintaining an awareness of their own emotional reactions to their patients, and understanding your boundaries as a professional, healthcare professionals can be compassionate while also staying focused on their primary responsibilities.
Be familiar with the policies of your organization.
Hospitals and clinics often have policies in place regarding communications with terminally ill patients; for example, how patients should be told (or in some cases, not told) the news that their diagnosis is terminal and how family members should be involved. Individual physicians and other health professionals in a management role may also have preferences. HIPAA and other confidentiality guidelines will also need to be carefully observed, all of which have legal implications.
Being diligent in following the guidelines, and using sensitivity and commonsense, helps to assure that communications with terminally ill patients is conducted with the highest standards of professionalism.
Keep in Mind: Talking to newly-diagnosed patients facing the end of life requires advanced preparation and communications skills beyond what is normally involved in being effective with patients. The starting place is being emotionally prepared, comfortable with your own beliefs, awareness of boundaries, and familiarity with guidelines. By being prepared, you are in a better position to be an objective, non-judgmental, and compassionate listener.
Understand how patients cope with a terminal diagnosis.
Coping with a medical condition that will end in death is an ongoing process, and much has been written about how patients come to accept their diagnosis. Dr. Elizabeth Kubler-Ross wrote about this process in her book, On Death and Dying, published in 1969. In her book, Kubler-Ross introduced the five stages that patients who have been diagnosed with a terminal illness go through as they deal with their emotional reactions to the diagnosis. These five stages include:
- Denial, expressing disbelief that the terminal diagnosis is possible.
- Anger, recognizing that the diagnosis is terminal and expressing anger at how unfairness of the situation.
- Bargaining, hoping that death can be postponed by making promises to a Higher Power to live in a way that is more productive or benefits others.
- Depression, as the patient begins to accept that death is inevitable, feeling sadness and going through a grieving process, possibly avoiding others during this time.
- Acceptance, with the realization that death is inevitable, and a sense of being at peace.
Many other books and Websites are also available which describe this process, from a psychosocial as well as from a spiritual or religious perspective.
Becoming familiar with this information can provide a perspective on how newly-diagnosed patients will cope with their terminal diagnosis in the days, weeks, and months ahead.
Know who you can call upon for help.
As discussed in previous chapters, hospitals and clinics often maintain a listing of resources that patients can be referred to as psychosocial needs arise. Resources for patients facing death might include home healthcare, palliative care, hospice, spiritual and religious services, meal services such as Meals on Wheels, medical transportation, as well as counseling and social services. Hopefully, these resources are both up-to-date and comprehensive. Having resources available benefits not only the patient but the healthcare professional: having access to resources, and potential solutions, can help to reduce the sense of helplessness that both may be experiencing.
Healthcare professionals who do not have access to resources to help dying patients can locate these resources through the Internet as well as local listings, and social services organizations in their communities.
How Newly-Diagnosed Patients React to a Terminal Diagnosis
Newly-diagnosed patients experience their own unique reactions to a terminal diagnosis. Some patients will have strong beliefs about death, which may or may not be spiritual or religious in nature, which they can look to as a source of strength. The bleak prognosis may have been expected based on the progression of the condition, or past experiences. On the other hand, others have never have imagined that they would be facing death, at least not at this time in their lives, and will find themselves struggling with how to deal with the probability that they will soon die.
The ways in which newly-diagnosed patients react to the diagnosis play a key role. Patients in Fight reaction are most likely to take the diagnosis in stride, or even to decide to fight it in any way possible. Some Fighters will succeed in at least delaying the progress of the condition, and living longer than expected, by becoming actively involved in making optimal treatment decisions and lifestyle changes. A minority may find an alternate treatment that results in remission if not a cure, even if it means traveling to another state to be treated. However, patients in Fight reaction nevertheless often experience shock, and extreme emotional reaction, when initially learning of the diagnosis. Patients in Flight reaction will retreat into their emotions and be inconsolable, and may use their emotions as a wall to avoid discussing or otherwise considering the possibility of death. Those in Flight reaction are also prone to unquestionably attach themselves to a ‘miracle’ treatment that may or may not be recommended. Patients in Freeze reaction are likely to shut down emotionally and give themselves up to fate and/or allow others to make any needed decisions for them.
Common reactions of patients who have received the news that their condition cannot be treated are described below:
Figure 13-__
A photo of a patient with a sad expression talking with a healthcare professional.
This can’t be happening.
Lara’s Story
When Lara was informed by her physician that the prognosis for her recurrence of cancer was not treatable, her first reaction was one of disbelief. While her physician had informed that her cancer could return, she had been cancer free for a few years and assumed that, at this point in her life, she was cancer-free.
“First, I thought that I had misunderstood him, or even that he was kidding around with me. I just couldn’t believe that not only had my cancer returned, but that he didn’t think he would be able to treat it this time. He actually told me that I should begin preparing myself for death, and that he would break the news to my family if I didn’t want to. It was like everything went into slow motion while I stood there watching. All I could manage to say was, ‘this can’t be happening.’”
What the patient is experiencing
Patients often initially react to a terminal diagnosis with shock and disbelief. The news is so unexpected, and so final, that they have difficulty grasping it, both intellectually and emotionally. This reaction is similar to the initial shock and disbelief that patients might experience with any medical diagnosis. However, when the news includes informing the patient that they cannot be treated, the shock and disbelief are much more intense.
Patients may need time to ‘sit with’ this news, to sort it out in terms of what it means to them and how they feel. If they are not able to come to terms with the diagnosis, and accept it, they may progress into denial. Patients who continue to deny the finality of their diagnosis will suffer emotionally, may not be compliant with recommendations regarding their ongoing care, and will be less likely to participate in making decisions. This, in turn, places an increased burden on family members and other loves ones, as well as the healthcare team.
I am afraid to die.
Felix’s Story
Felix felt fear when his physician gave him his diagnosis. When his physician went on to explain that his condition was rare and that most patients with his diagnosis did not survive beyond a year, Felix experienced the worst fear of his life. He had never thought much about the possibility of dying, and assumed that he would have a normal lifespan.
“The idea of death, when I allowed myself to think about it at all, was always terrifying to me. So when the doctor gave me the news, I felt such profound terror that I thought I might pass out. All I could think about was struggling to stay alive and feeling myself slipping away. I reached out and grabbed my wife’s hand and squeezed it hard, as if I was trying to keep from being pulled into the next world, whatever that was going to be. I have never felt that afraid in my life.”
What the patient is experiencing
The fear factor is often present when patients are facing a medical diagnosis. They fear losing what is most important to them in life, including vitality, control, financial security, relationships, roles they value… life as they know it. Most diagnoses are not death sentences, though patients may be at risk if treatments are not successful or if they are not compliant with treatment. However, for patients diagnosed with a condition that is terminal, their worst possible fears are confirmed. They fear the unknown: the process of decline and death, how it will affect them and their loved ones, as well as death itself.
Figure 13-__
A photo of a patient with an impatient expression.
I have so much to get done.
Katie’s Story
Katie had always referred to herself as a ‘hard charger,’ balancing a career with being a wife and mother, as did the people in her life. She never seemed to stop running, somehow managing to excel professionally while being actively involved in the lives of her children. When she was diagnosed with a fatal condition, the first thing Katie did was to make a list of everything she wanted to accomplish before she died, with most of the items on the list focused on the needs of her family.
“I have all of these things that I wanted to finish, some of them probably kind of silly, like remodeling the living room, and others really important, like making sure my daughter finished all of her college applications. I know I am sick and I can feel my energy declining, but I am going to push myself as hard as I can to accomplish everything on the list. This is what I have to do for myself and for the people I love.”
What the patient is experiencing
Patients facing a terminal illness may feel a sense of urgency to accomplish as much as possible before they die. There are multiple reasons for feeling this urgency. They may want to make sure their loved ones are taken care of, or they may want to leave a legacy behind. Staying active may be a way of denying the sense of helplessness and powerlessness resulting from the knowledge that nothing can be done medically. Also, this urgency may be the result of superstitious thinking, as if by staying busy it is possible to somehow outrun death, or to be so needed by others that dying is out of the question.
What will my family do?
Gabriel’s Story
When Gabriel was told that his condition was fatal, he felt an extreme sadness for his mother. She had been devoted to him his whole life, and he to her, and he knew that, while his siblings would be there to watch over her, she would never get over losing him. He imagined her sitting alone in her home and missing him. He worried that she would cry often, and that she might be so overcome with sadness that she wouldn’t take care of herself. When he had these thoughts, Gabriel cried for himself, and for her.
“I don’t know how my mother will live without me. She is so dependent on me. I call her every day and talk about my day, and she tells me about hers. We have dinner together at least once a week, and I often bring her to my home to spend some time on the weekends. When I am gone, all of this will end. I don’t know how she can possibly replace me. I’m afraid her life and health will decline.”
What the patient is experiencing
Patients who know they are dying often begin their own grieving process. They are grieving for the loss of their own lives and they are grieving for the loss that their loved ones will soon experience. They worry that loved ones will not be able to handle the loss, and may spend large amounts of time imagining what it will be like for them, how emotionally debilitated they will be their grief, and how it will affect their well-being.
I won’t be here a week from now.
Janis’s Story
When Janis heard her physician say, ‘there’s nothing more that I can do,’ she burst into tears. This was the last thing she thought she would hear from him and she felt as if she was being abandoned. Her physician talked more about what Janis could expect in terms of the care that would be provided, but at that point Janis had stopped listening. When she came out of the office, she called her husband at work and said: “I’ve only got a week to live.”
“My mind completely shut down once he said that my condition was not treatable. I just saw my life crumbling before me. What would my husband do? I wasn’t ready to die. I was terrified. The doctor said something about what I could expect but I wasn’t able to really listen. So I walked out of his office with the worst possible scenario in mind, that I would be gone in a week. A couple of days later, my husband and I talked to the doctor together and he told us I might live another year. I realized then how distraught I was.”
What the patient is experiencing
The shock of learning about a fatal condition can be so unsettling to a patient that they automatically assume the worst. If they are not able to listen any further, they may act upon this assumption and create further distress for themselves as well as for their loved ones. Without adequate information, it is human nature to create a story to fill in the gaps.
Keep in Mind: You can honor another person by being a patient and non-judgmental listener, or simply being willing to sit together in silence. This is one of the greatest needs of a patient facing death.
The Starting Place for Healthcare Professionals: ‘Being Present’ With the Patient
Healthcare professionals who are inexperienced in working with patients newly diagnosed with terminal medical conditions often fear that they won’t have the right words to make the patient feel better emotionally, or that they will say something wrong. Because healthcare professionals may be feeling their own helplessness, they may avoid offering support that could be helpful to patients. However, just as there are no words for patients to use to adequately describe their reactions to the news that they are dying, there are no words that healthcare professionals can use to ‘make things better’ for patients.
Figure 13-__
A healthcare professional listening as a patient talks.
A Listening Ear
What patients most need during this time is someone who is willing and able to be a good listener. They aren’t looking for someone to take the emotional pain away or to provide a roadmap for the future. What they do need are people who are willing to listen. Often, families are unable to talk about death, at least when the diagnosis is initially given, or the patients may not want to inform family members of the diagnosis until they have had a chance to process it themselves. Healthcare professionals can benefit patients emotionally by being present, that is, being willing to sit for a moment, to listen to them talk about their fear, anger, sadness, or simply to sit in silence. This requires only patience and compassion from the healthcare professional, not spiritual or mental health counseling skills.
Objective Medical Information
Healthcare professionals can also assist by offering objective medical information, provided with the guidelines of their practice setting, or encouraging patients to talk with their physicians. As discussed previously, because patients may shut down emotionally after hearing that their condition is fatal, they may miss other valuable information that the physician offers during this conversation. Healthcare professionals can also offer to discuss this information with patients, and serve as a listening ear as they process it, as well as offer further suggestions and resources. It’s important to give patients information that they can read on their own once they feel stronger emotionally and have gathered their thoughts.
SIDEBAR: BODY LANGUAGE
Newly-diagnosed patients who are facing a terminal condition may have body language that includes:
- Weeping, holding hands up to his/her face or across chest
- Slumped posture
- Jerky, agitated movements
- Looking down, or avoiding eye contact
- Unable to sit still or relax
- Covering their face with their hands or rubbing their temples
SIDEBAR: SELF-TALK
Negative self-talk around terminal illness includes:
If I’m going to die, why bother to live?
I must have done something to deserve this.
I’m so afraid of what I’m going to have to go through before I finally die.
Nobody is going want to have to face this with me. I’ll be left alone.
I can’t face this.
Antidotes to negative self-talk about terminal illness include:
I can face this with acceptance and dignity.
I have a lot of supportive people around me.
Death is a part of life and I am ready to face this.
I will continue to do everything possible to take care of myself and to be there for the people who love me.
SIDEBAR: EDUCATIONAL MOMENT: Approaching the End-of-Life
Newly-diagnosed patients experience fear, helplessness, and other emotions when they first learn that their diagnosis is not treatable. Part of the process of coming to terms with this knowledge is to have the opportunity to talk about it and to express these emotions, and to feel listened to and supported. Healthcare professionals can help with this process by encouraging patients to talk and by being willing listeners and providing printed information to read later.
Figure 13-__
A photo of a healthcare professional talking with family members.
Families and the End of Life
Family members and other loved ones experience many of the same reactions to the patient’s diagnosis as does the patient him/herself. They fear for the patient and for their own futures. The news may be so shocking that family members initially react and disbelief and denial. They feel sad that they will be losing someone they love, along with the hopes and dreams for the future. They may be concerned about their own financial well-being, as well as that of other family members. Loved ones often feel anger over the unfairness of life. The feel helpless to do anything to change the situation, and powerless as they face a healthcare system that has let them down and may not appear to be treating the patient in the most sensitive manner. Stress and interpersonal conflict may result.
The reactions of family members and other loved ones will have a direct effect on the patient. Patients may receive support from their families and friends immediately after they receive their diagnosis, as the people in their lives rally around them. While this support is needed and helpful to the patient, family members may attempt to become so involved in the patient’s healthcare, out of their own sense of helplessness, that they take the patient’s control away. This will present challenges for healthcare professionals who may receive directions from family members that conflicts with what the patient wants, or is not consistent with best practices. Family members may not be supportive because they are unable to deal with their own emotional reactions, or may be in denial to the extent that they won’t acknowledge the possibility of death. In these situations, patients may feel as if they have been abandoned by their families, at least temporarily. If family members need to become actively involved in making care decisions, and acting as caregivers, the patient’s healthcare team is left with the additional responsibility of attempting to encourage patient-family communications or making referrals to community agencies.
Unresolved family issues can have a negative effect on patients. They may feel responsible for the turmoil that family members are experiencing and, consequently, avoid expressing how they are feeling or avoid asking for help that they may need. Turmoil and unresolved family issues can cause further stress for patients at a time when they need to be cared for and supported. Given the stress that both patients and family members may be feeling, healthcare professionals can help by being sensitive to signs that they may be experiencing emotional stress or conflict. These signs might include crying, agitation, arguing, or avoidance of communication. It is recommended that, when stress or conflict is apparent among patients and their family members, these concerns be brought to the attention of the physician, or others in leadership roles on the healthcare team, so that appropriate intervention or referrals can occur.
Referral Options for End-of-Life Care
Numerous resources are available for patients facing the end of life, some of which are included in the Resources section of the Appendix. Below are some of the kinds of resources to consider for newly-diagnosed patients, as well as their families and other loved ones.
Mental Health Counseling
Counselors and psychotherapy can help for patients who are overwhelmed with emotions, or who simply need an objective listening ear to help gain some perspective on their diagnosis. Ideally, this individual should have experience in working with patients and caregivers facing end-of-life issues.
Spiritual Counseling
Patients and family members may have access to a member of the clergy, or other religious or spiritual advisor, upon whom they can call for counseling. Non-denominational spiritual counselors may also be available. It is recommended that referrals be made to individuals who most closely match spiritual or religious background and preferences of the patient or family member.
Self-Help Groups
A number of organizations exist that are focused on helping individuals facing specific diagnoses, such as cancer, diabetes, and HIV, among many others, and these organizations often provide counseling and support. In larger metropolitan areas, there are often organizations who specifically serve individuals facing death, offering counseling, support groups, and classes such as meditation and yoga. Religious institutions may also offer groups focused on death and grieving.
Internet-based Resources
The World Wide Web has any number of Websites offering end-of-life related information and inspiration. Some sites are sponsored by health-related organizations, others are religious in nature. Individuals who have faced these issues with others, or who are facing terminal illness themselves, maintain blogs directed toward patients and family members. However, as with health-related Websites in general, not all are reliable and trustworthy, and some can also be damaging. If recommending the Web to patients, it is always a good idea for healthcare professionals to maintain a list of sites that they know to be sponsored by trusted sources.
Medical Options
Going forward, newly-diagnosed patients may have a need for palliative care, hospice, home health care, and other specialized services. When patients are initially diagnosed, they may not yet have been assessed regarding the kinds of medical needs they will have. However, it is recommended that all members of the healthcare team be familiar with these resources so that, after the physician and supervising nurses have made recommendations, other members of the team be prepared to answer additional questions that might arise.
Figure 13-__
Marcus talking with Sarita and Ellen.
Rx: Conducting a Conversation to Introduce End-of-Life Issues
Sarita and Ellen had worked with many newly-diagnosed patients during their time at the cancer treatment center. During this time, they had become familiar with the intense emotional reactions that patients experience when first learning that their conditions are not treatable and had learned how to help patients during this difficult time.
Ellen: I’m so sorry, Marcus. Please know that Sarita and I are here to help in any way that we can.
Sarita: Absolutely. Just let us know what we can do.
Marcus nods in acknowledgement but is unable to speak. Ellen and Sarita wait patiently.
Marcus: I guess I can talk now, but I don’t know what to say. I didn’t expect to get this news today.
Ellen: Nobody expects you to say anything, Marcus. We understand how much this hurts.
Marcus cries again for a few moments, then blows his nose and looks up at Sarita and Ellen.
Sarita: You know, Marcus, we have a lot of resources here to help you. We have counselors that you can speak with. We also have a social work department who can help you with anything that comes up.
Marcus nods.
Ellen: What Sarita is saying is that you don’t have to go through this alone. You have a lot of support.
Marcus: I don’t know what I need right now.
Ellen: That’s okay. You don’t need to. But I want you to know that when you’re ready, we have a lot of resources to help you.
Marcus: Okay.
Sarita: Dr. Morgan is recommending some chemotherapy, which I will be managing. And Ellen will be in charge of your treatment planning. Do you want us to go over any of this with you now?
Marcus: I don’t think I can handle that right now.
Sarita: That’s alright. We don’t need to right now. Maybe we could set up a time for you to come back in a couple of days. Would that be better?
Marcus: Yes, I think it would.
Ellen: I’ll set up a time for you to come back, Marcus. I do want to let you know that Sarita and I are here Monday through Friday during the work day, and you can always give us a call if you have any questions or if you want any of the resources that we have available. If I can’t answer the phone, I will call you back that day. We also have an emergency number during the off-hours and weekend. The staff here is never further away than your telephone. Okay?
Marcus: Okay.
Sarita: Now, we have to ask you, Marcus. What are you going to do for the rest of the day? It’s really important that you get some support. If you don’t have any available, we can set you up with some help right now.
Marcus: I have a friend I can call. He knows I was coming in for my test results and offered to be on call for me.
Sarita: Will you call him right away?
Marcus: Yes. I am going to my car and I’ll call him from there.
Ellen: That sounds like a good idea, Marcus. And if you can’t reach him, please feel free to call us if you need anything today. Will you please do that?
Marcus: Yes, I will.
Ellen: Okay Marcus. I’ll walk out with you and set up an appointment.
Sarita: We’re standing by for you. I will see you in a couple of days.
Figure 13-__
As in previous chapters, an illustration of stair steps, labeled according to the sub-heads below, including Listen, Acknowledge Emotions, Patient in Control, Suggest Resources, Set Expectations.
Guidelines for Conducting a Conversation to Introduce End-of-Life Issues
The following are guidelines for conducting a conversation with patients who have learned that they have been diagnosed with a terminal illness.
Listen quietly.
Patients who have just learned that their condition is untreatable do not need to be provided with advice or ‘words of wisdom.’ Most likely, they would consider these words to be inadequate, if not patronizing. Instead, they can benefit from someone who is able to simple ‘be present’ with them as they sit with their feelings who is willing to simply be quiet and to listen when the patient is ready to talk. Ellen and Sarita sat quietly as Marcus wept.
Acknowledge emotions.
Notice that Ellen and Sarita encouraged Marcus to take his time and feel his emotions. They let him know that they understood that he was hurting. This helped to normalize his strong feelings – to reinforce that it was acceptable to express them – and to convey that they were comfortable with his feelings. While Marcus was able to weep openly, other patients might have needed some encouragement to be open with their feelings.
Suggest that resources are available.
While newly-diagnosed patients are not necessarily ready to hear about the resources that they may need, it is important for them to know that, as various needs arise, help will be available. Ellen and Sarita informed Marcus that resources were available for his most immediate need, emotional support, as well as other resources.
Let the patient feel in control
Patients newly-diagnosed with a terminal condition are most likely feeling helpless and out of control which might cause them to resist any advice or directions that they perceived as being pushed off on them. Healthcare professionals can avoid creating resistance in patients by offering, but being careful not to dictate. Notice that Sarita and Ellen remained tentative with Marcus. They made it known that resources were available if he was interested. They offered to go over information about his chemotherapy and treatment plan, but allowed him to decide if he wanted to discuss it at that time. They offered to set up a return visit in a couple of days. Marcus was not in control of his diagnosis, but he did have a measure of control over his interactions with his treatment team.
Tell the patient how you can help.
Patients need to know what kinds of assistance they can expect from the members of their healthcare team, and the circumstances under which they can expect this assistance. Ellen and Sarita suggested to Marcus that they could help to find needed resources but not that they could personally meet all of his needs. They also informed him of the hours that they would be available, and what he could expect when they were not available. This would help to assure that Marcus would not have expectations that they would not be able to meet.
Assure that immediate needs are met.
It was clear to Ellen and Sarita that Marcus was emotionally distraught over his diagnosis and that he was in need of immediate emotional support. Rather than assuming that Marcus would reach out for support, they gently told him that support was important during this time and asked him what support he had available. Furthermore, they encouraged him to reach out for the support immediately. While they risked causing Marcus to become defensive if he felt they were pushing him too hard in this direction, it was also their professional opinion that it was necessary for him to make an emotional connection that afternoon.
Use the patient’s first name.
Hearing one’s name can be soothing during a time of stress. Notice that Sarita and Ellen repeatedly used Marcus’s name when addressing him.
Summary
In spite of the many miracles of modern medicine, the news about a medical diagnosis is not always optimistic. Sometimes a patient’s condition is untreatable and the best he/she can do is accept it and prepare to die. Each patient will have a process ahead of them that is unique to them as individuals. However, healthcare professionals can help these patients prepare for the road ahead by understanding how patients react to the news of a terminal illness, encouraging them to express themselves and to ask questions, and being a willing listener.