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How to be an Encouraging Caregiver Part 1: Communication and Empathy

 

The Mesothelioma Cancer Alliance recently spoke to Dr. Richard McQuellon, the Director of the Psychosocial Oncology and Cancer Patient Support Programs at Wake Forest Baptist Medical Center, to hear his expert advice on how to be the most encouraging and empathetic caregiver. In part one of a two part piece, Dr. McQuellon explains why open communication and empathy can be some of a cancer patient's strongest medicine when it comes from their caregiver.


Each day thousands of people become caregivers. For most, this new role is neither easy nor comfortable. While it may sound cliché, most find one of the biggest challenges to be effective communication between the person providing care and the one receiving it. Despite the best of intentions it is not always easy to communicate well under these circumstances, or find deep empathy for something one has never before experienced.


I believe that open dialogue must not be avoided until the last minute when opportunities will be limited, but that caregivers and loved ones can embrace this time, mortal time, honestly as a way to sensitively and compassionately engage with those for whom a central fact of life is realized -- that all of our lives are time-limited. My book, The Art of Conversation Through Serious Illness, discusses how to be an encouraging caregiver and friend under the most difficult circumstances, when the possibility of death is all too real.


For caregivers and recipients, everyday conversation can become both more important and more complicated, especially when one of the partners has been diagnosed with cancer and has entered what we refer to as mortal time— the emotional experience when one becomes aware of their own mortality. The personal assumptions and histories of patients and caregivers set in motion a rhythm of conversation between them that has the power to generate consolation and hope for both. Healing conversation has two basic requirements. The more deeply we accept both, the richer the communication that will result.


The first is to listen carefully to grasp our partner’s take on things; let him or her know that we “get” what’s happening as he or she feels and sees it. Understanding another means seeing a situation from his or her point of view. Empathy is one word for such understanding. To empathize is to grasp both the events and the feelings conveyed through another’s story, to make a disciplined effort to set aside our thoughts and feelings and walk in the other’s shoes for a time.


The events are the facts of the conversation, as delivered in words. Feelings signal emotional tone and intensity. Feelings are usually expressed by how words are spoken, including nonverbal signals, and are much more complex than any transcript of words can capture. Empathy requires both attentive listening and appropriate eye contact to fathom the content and feelings of a patient’s communication. Caregivers who are empathetic invite the possibility of hope-creating conversations.


Empathy is a quality and specific behavior that allows one to enter the world of another. The experience of receiving empathy can put people in touch with their own voices, in touch with themselves. It is a skill to put feelings of compassion into action. First, we must grasp what the other is going through and how they feel about it. Then, we must convey understanding; let them know that we “get it.” Sometimes we can simply reflect back what we have heard in the simplest language possible; sometimes words are unnecessary and a compassionate nod of the head or touch of the hand is sufficient.


Empathy can be powerful medicine for several reasons.

Caregivers who are good listeners can gain new insight by hearing themselves (and others) talk about a situation. Often, caregivers who listen empathetically can clarify their own assumptions.Clarity of a situation can lead to problem-solving, either through complex existential questions (why is this happening to me?) or practical decisions (whether to wear a wig or a scarf for a head covering). Putting experience into words can open up new understandings and possibilities.Extending empathy allows the speaker to confide. Before rushing to speak or resolve an issue, pause. This isn’t easy. Most of us have a natural tendency to relieve the suffering of another by responding quickly, but this can shut off or interrupt feelings just at the moment they need to be expressed.Allow the speaker to name his or her fear; this is the first step toward mastering that fear. Mastery can bring relief, even if only temporarily.We are human. While we cannot directly experience the life of another, we can do so indirectly through the quality of our empathy.

Listening deeply and responding with empathy brings us as close as we can get to forms of suffering that we have not experienced ourselves. With a rare cancer such as mesothelioma, vicarious experience is limited, but real.


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Richard McQuellon, PhD, is professor in the Department of Medicine, Section of Hematology and Oncology and Director of the Psychosocial Oncology and Cancer Patient Support Programs at Wake Forest Baptist Medical Center. He received a BS in Psychology from the University of Washington, Ph.D. in Counseling Psychology from Michigan State University and has over 20 years of clinical experience working with cancer patients and their families. His clinical work involves survivorship planning from diagnosis though end of life and the psychosocial care of patients undergoing extreme cancer treatments including stem cell transplantation. He has served on the editorial boards of the Journal of Clinical Oncology and Bone Marrow Transplantation and has published over 125 abstracts, journal articles and textbook chapters. He is currently on the editorial board of the Journal of Hospice and Palliative Medicine.


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How to be an Encouraging Caregiver Part 2: Finding the Right Words

 

In part 2 of the Mesothelioma Cancer Alliance's interview with Dr. Richard McQuellon, Dr. McQuellon offers expert advice on how honesty is paramount to an open and loving relationship between a patient and a caregiver. Finding the right words to say to a loved one battling with cancer is already a difficult task, and when compounded with a rare cancer like mesothelioma, honesty is the best policy for open and effective communication to continue during this tough time.


The second requirement of healing conversation is to respond thoughtfully and honestly. Our conversations reveal what we think, feel, believe, desire and question. Healing conversations require that we put into words our response to what we have heard. But there are two obligations; we must call things as we see them while maintaining profound respect for our conversation partner.


Anyone taking relationships seriously feels the tension inherent in honest, loving speech. Something may be true, but that doesn’t mean it will always be well received, no matter how tactfully you put it. For example, it may be true for some patients that “chemotherapy is very hard” or that “a particular type of cancer almost always comes back,” but saying that to a person may likely be misguided honesty, perhaps revealing a caregiver’s discomfort more than delivering necessary information.


Truthful conversation is a process best informed by experience, compassion and wisdom. While the requirements of healing conversation are simple— namely, to listen and respond— the communication process itself is a complex matter of mutual interpretation of facts and feelings. Caregivers may find that accurate interpretation and skillful use of language are acquired over many years and will surely be tested in challenging times.


Finding the right words can be difficult. Not knowing what to say is an important concern for caregivers accompanying someone in pain, coping with a cancer diagnosis and being treated for a life-threatening illness. Most people have little practice at this, and even experienced professionals are often at a loss for words. Words can seem hollow. Consequently, we feel inadequate, don’t know what to say, or when to say it, and may avoid the topic of what’s happening to our friend or loved one altogether because we simply can’t find good words. Even if we find the right words, can we then make them words well spoken?


As mentioned before, effective conversation requires responding thoughtfully and truthfully. Many caregivers get stuck on “the right thing to say.” Sometimes there is no need for words – just having an attentive presence and a caring silence is all that is required.


Words can take strange twists during times of illness and pain, and not only for caregivers. Patients often search for the right time and the right words to speak the truth. Often, they are aware their honesty will lead to suffering. When someone trusts you to share his or her emotions, remember the importance of responding thoughtfully.


Not sure what to say? When offered honestly, these phrases or questions may comfort:

I am with you in this.You can count on me.Can you tell me how you’re holding up?How can I be useful?

Stated with genuineness and empathy these phrases invite further conversations rather than closing off meaningful dialogue. A person who listens carefully and responds thoughtfully with simple, direct statements like these has the power to help lower the emotional distress.


Whatever the details of a life-threatening illness, and however great the differences in backgrounds, roles and responsibilities of those communicating about it, authentic conversation has the power to enhance how people cope. Talking honestly and listening well can illuminate and enrich the meaning of life for caregivers and people living in the sacred place of coping together.


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Richard McQuellon, PhD, is professor in the Department of Medicine, Section of Hematology and Oncology and Director of the Psychosocial Oncology and Cancer Patient Support Programs at Wake Forest Baptist Medical Center. He received a BS in Psychology from the University of Washington, Ph.D. in Counseling Psychology from Michigan State University and has over 20 years of clinical experience working with cancer patients and their families. His clinical work involves survivorship planning from diagnosis though end of life and the psychosocial care of patients undergoing extreme cancer treatments including stem cell transplantation. He has served on the editorial boards of the Journal of Clinical Oncology and Bone Marrow Transplantation and has published over 125 abstracts, journal articles and textbook chapters. He is currently on the editorial board of the Journal of Hospice and Palliative Medicine.

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