Death is the ugly relative we don’t talk about. It’s hidden from our thoughts as if it doesn’t exist. Worse, we carry our perceptive blinders into our clinical practice. Entering a patient’s room, we tell them how good they’re looking, despite sunken cheeks and a sallow complexion. We may even make the mistake of asking how they feel. “Lousily,” they answer incredulously. “I’m dying you know!” We stare at them and mutter something later regretted, such as, “Oh, I’m sorry to hear that.”
But what should we be doing? The answer involves how we view our role. I remember a conversation I had with my mother when I decided to become a speech-language pathologist. She was a wonderful, but simple woman. As she got older, there were things she had difficulty understanding—like my choice of profession. “Speech-Language Pathology?” she asked, “What’s that?” After explaining what I did, I thought she finally understood until I heard her talking to a friend. “He’s a speech-language pathologist. You know, someone who helps children move their tongues.” No, she didn’t quite get it. But then, I often wonder how far off she was from how we currently view our profession (Goldberg, 2003).
Many people believe that doing in-depth psychological counseling with the dying is beyond our scope of practice. That’s absolutely correct. But there’s a way of interacting that falls between callously ignoring death and doing psychotherapy. As a profession, we’ve strayed from the first visions our founders had more than seventy years ago. Yes, they wanted us to correct speech and language problems, but they also believed we had an obligation to clients that went far beyond that. They viewed the people we served as whole human beings, who not only needed our technical services, but also our compassion (Travis, 1957). Therapy for the dying is not about technical competency. It’s about facilitating painful communication; sometimes with words, at other times just by our presence. Some of the communication is to others, but much of it is inwardly directed.
Although this is a chapter about dying, you won’t find statistics, hospital rules, universal precautions, Medicare billing practices, demographics, or ASHA’s code of ethics. In this chapter, there will be little objectivity death isn’t something you can keep away at arm’s length. There is an old Tibetan saying that one should draw close to them those things they fear the most (P. Rinpoche, 1994). In this chapter, we’re going to get chummy with death. You’ll be asked to do four things that will bring it out of the closet:
Examine death as someone who will eventually experience it.
Understand how the dying process affects personality.
Stand your role as a “communication specialist” on its head
Allow your dying patients to teach you about living
This chapter contains theory, observation, and practice. The practice component is clearly delineated in the What to Do sections. Although there is a natural tendency to jump there, I suggest you don’t. It would be similar to making love without any foreplay. The theories and observations are intermingled; similar to the way a dye defuses when introduced into a liquid. Elizabeth Kubler-Ross wrote about the stages of dying (Kubler-Ross, 1997). Although many people read them as if each is clearly identifiable, they’re merely guidelines. Much of what I know about death comes from my experiences as a bedside hospice volunteer. In over one hundred deaths, I’ve rarely saw anything as orderly as written in texts.
Death as an Equal Opportunity Visitor
There was a time in the middle ages when dying wasn’t considered a big deal (Moller, 1996). You knew something irreversible was happening to your body despite ingesting ancient and blessed potions. You made peace with everyone, tied up loose ends, gave away the furniture, and then, just stopped breathing. Now we can be kept alive by advanced technology, regardless of the quality of life it gives us.
Using the “D” Word
In the 1930’s there was a misguided notion that if we said “stutterer” to a child, he or she would be traumatized by the word (Van Riper, 1939). Somehow, a child who was teased by other children for repeating and blocking wouldn’t know he was doing something very different from other children. Nonsense! We often do the same thing with those who are dying. Family and friends are afraid of using the “D” word, although the person is aware of it. And when patients corner physicians for an answer regarding how long they have to live, even the most brilliant stumble as if they were on a first date.
What to Do * If your patient wants to talk about dying, don’t change the subject.
* Don’t be afraid to use the words “death” or “dying.”
* Don’t’ use euphemisms, such as “passing on”, “passing away,” unless
your patient uses them first.
Changes in Personality
Dying is a messy process. It entails probably the most profound change a person can experience (Goldberg, 2006). Change is difficult for most people to adjust to, whether it involves moving from one city to another, going from being single to partnered, or perpetually late to being on time. In the dying process, the bedrock of a person’s personality is changed, making a world that may have been as solid as concrete, as unstable as a bowl of Jell-O. People are moving from independence to dependence, health to a deadly illness, being in control to having none. Those who have been independent their entire lives, now have to ask others to help them with some of their most personal hygiene needs. Men and women who were responsible for running large companies now have difficulty making change. People who were known for a mastery of words can’t string together more than four in a sentence. And the worst, bodies are dramatically changing, both outwardly and internally.
Tibetans have a word for this rootless psychological state. They call it the Bardo (S. Rinpoche, 1994). Even though it traditionally is reserved for the time between death and the consciousness leaving the body, it can be applied to any type of transition. A transition is simply the movement from point A to point B. From who you were to who you are being (Goldberg, 2002). There is discomfort in transitions; sometimes even fear. We are moving from something we know, to an unknown. Some people believe that the fear may people experience in change has less to do with going to the unknown, and more with giving up the known.
I’ve witnessed family members and friends visiting people who were dying and couldn’t understand the changes they saw. Although knowing the person was dying, they expected their personality to remain in tact. When the kind, happy, accepting person became belligerent and was no longer interested in anything but his own memories, people were put off.
What to Do: * Expect your patients to have sudden mood shifts.
* Don’t minimize the changes they are experiencing
* If patients ask what it’s like to die, tell them if you know. If not, find
someone who does.
* Don’t initiate discussions about dying. When patients are ready to
talk about it, they’ll let you know.
* Accept every change in your patient’s personality. Don’t expect
Dependence and Loss of Control
Gratitude is a public statement of personal need. The grateful person is saying “I can’t do it anymore by myself.” For many people, the difficulty they have in expressing gratitude is not a sign of being inconsiderate. Rather, it’s a denial of their condition (Emmons, 2004). Bruce, a retired educator came to a hospice facility in San Francisco where I was a bedside volunteer. He had congestive heart failure and was obsessively independent. As he became weaker, Irma, a very considerate staff person tried to help him. He not only refused all of her efforts, but would often yell at her. Allowing anyone to help him meant he was dying, something he couldn’t accept. Once, after being screamed and cursed to, Irma quietly said, “I know you don’t want my help now, but I want you to know, when you can accept it, I’ll be here for you.”
For two weeks he refused all offers of help, causing himself needless pain. I was with him when he had to urinate and realized his urinal was full. With great hesitation he apologetically asked me to empty it. When I returned, he spent the next five minutes repeatedly thanking me. The gratitude he expressed was totally out of proportion to what I thought I had done. I made the mistake of saying, “It was nothing.” In my mind, what I did was routine. To Bruce, asking a university professor to empty a urinal was a public statement of his loss of independence.
What to Do: * When someone offers thanks, accept it without qualifications
* Understand that being grateful can be embarrassing
As people approach death, they often have regrets about things they did and those they wish they would have done. These often take the form of goals not achieved, apologies they owe, and apologies they want to receive. There a natural inclination for professionals to either minimize these concerns or switch the conversation to less painful topics. However, unless resolved, these can be the barriers preventing patients from having a peaceful death.
Unmet Goals. Western civilization is goal-driven. We strive to achieve specific things: to amass a certain amount of money, to live in a comfortable home, to become a speech-language pathologist. Although your patients all have individual interests, they are a product of the society in which they live (Weber, 1946). It’s as if they’re logs flowing down a river. Although each moves differently, all are being carried downstream by the flow of water. Patients whose lives have been goal-directed will often focus on things they haven’t achieved, regardless of the accomplishments in their lives. Regardless of where it lays in the general scheme of things, if it’s something they dwell on as they approach death, it’s significant for them. It’s less important for you to understand why, and just acknowledge it.
I cared for a well-known journalist who had written ten books throughout his illustrious life, and hundreds of newspaper columns during World War II. Many people believed he was partially responsible for changing how war stories were reported. His prostate cancer had metastasized and as he approached death, he focused on a book he was writing that he knew would never be completed. Despite having accomplished more in his life than most other journalists, he only could focus on the book he wouldn’t complete—one he acknowledged would be a “minor one.”
What to Do: * Let them express their regrets and acknowledge its importance to them.
* Help them examine the factors beyond their control that prevented them for
achieving the goal.
*Try to redirect the focus on things they did achieve without minimizing what they
Apologies-To be Given and Received. We all have things we’re sorry we did, and for which we would like to receive forgiveness. We also have things done to us that we feel pain years after they occurred. What I’ve found is that as people approach death, wanting to be forgiven and wanting to forgive become important. For those of you who are runners, it’s like a burr in your sock that prevents you from feeling good about your run, no matter how fast it was. Not forgiving or receiving forgiveness can prevent people from having a “good death” (Kapleau, 1989). When I first met Ethel, an 82-year-old woman who was still functioning well and independently, the dementia was starting. During my first three weekly visits she repeated a story of how she was ignored by other teachers in an elementary school. As she told and retold the detailed story, the pain she experienced over forty-years ago changed a beautiful smiling face into one clearly in pain. I spent many hours with her trying to explore how the other teachers’ inadequacies may have caused them to do hurtful things. After two months of conversations, she was finally able to forgive their cruelty. Whether they were justified in snubbing her is moot. My concern was to do whatever was necessary to help her death be more peaceful than it would have been harboring forty-year-old resentments.
What To Do: *If a person needs to be forgiven by someone who is still alive, help them construct the
words that can express it. If those people are dead or not able to be received, ask the
patient to imagine you are that person and ask for forgiveness. Alternatively, have them
dictate a letter to the person.
* If they want to forgive someone, use the same procedures
* Help them understand that often the meanness a person has
is a reflection of their own needs rather than anything negative
One of the tenants of most Eastern religions and philosophies is to simplify your life (Hanh, 2000). You can see it with most people who are dying regardless if they have or don’t have a spiritual belief. Life is analogous to a complicated musical piece, such as Mahler’s Fifth Symphony or Billy Strayhorn’s Take the A Train. In both you can hear numerous instruments, the melody, the cord changes, the variations, and on and on. But if you really want to understand the piece, you reduce it down to it’s basic melody. From there everything else develops. For people who are dying, it’s the melody of their life that they strive to hear.
In this stripping-away process, most things not important for the transition are disregarded. I’ve found it to be similar in adults and children, although expressed differently. Children prefer just to be held rather than playing with their favorite toys. Adults give up all pretenses as their egos dissolve. With all ages, verbal communication dwindles. Unfortunately, many people misinterpret this as “withdrawal.” This stripping-away can take many forms. Sometimes it’s subtle as when someone who was on top of current events, no longer cares. Other times, it’s more blatant as when a well-known poet in San Francisco decided to give herself a going away party. She invited friends to her hospice facility and after everyone told her how she changed their lives, each person was individually called to her side. In a whisper, she said something to them, and gave each a single sheet of paper on which one of her poems were written. At the end of the procession, all of her poems were gone. Calmly, she turned to everyone and softly said, “Now, I’m ready to die.”
Few simplification processes will be as dramatic as this one. But you will see it happen with everyone. It’s almost as if the person is preparing for a trip to a foreign country and is limited by the airlines to carrying fifty pounds. What are they going to take? The choice will determine not only who the person becomes, but sometimes unfortunately, how they will die. Choosing some items will result in a good death. I was with someone who only focused on the love of her granddaughter and the kindness of the hospice volunteers. Although her death from a metastasized cancer that caused two strokes was physically difficult, it wasn’t psychologically. Conversely, a man who had been a firefighter could only focus on how his appearance had changed and that he didn’t want anyone, including his son, to see how he had deteriorated.
What to Do: *Understand that past interests won’t necessarily
*Be of interest as the person approaches death
*Interests will become basic—are people listening to me? Do people love me?
*What do I need for this journey?
Role as a Communication Specialist
Most people who are dying desperately want to talk about it to someone who will listen. As a hospice volunteer, I’ve often listened to people coming to terms with the end of their life: an 86-year-old who reviewed a life of blessings; a teenager, whose only regret was the emotional pain he was causing his mother; a child realizing she will never be a ballerina. I’ve also experienced it without words when holding the hand of a comatose woman who lived on the street her entire life, and a dying infant I held in my arms as she struggled to breathe.
The Need to Communicate
Many believe that as someone approaches death, their need to communicate diminishes. Actually, the reverse is true. Unfortunately, we misperceive a reduction in words as a reduction in need. People who are dying are facing the most profound transition they’ve ever encountered. Everything about them is changing. Silence in the dying is often not a sign of not wishing to communicate. It may signal great uncertainty or fear.
I was asked to visit a homeless schizophrenic who was dying of lung cancer at a hospice facility operated by the Sisters of Charity, Mother Teresa’s religious order. During my first visit, he didn’t say more than twenty words. I sat next to him and he would occasionally glance at me, then quickly avert his eyes. After forty minutes of silence, I said, “Harry, I have to go now. Thank you for letting me visit with you. Would you like me to come back next week?” I expected him to either remain silent or say “no.” Instead, without any hesitation and while looking directly at me, he said, “Yes. I’d like that a lot.” Our second meeting began as the first did. Then, after about fifteen minutes of silence, he said, “I’m afraid of dying. Do you know what it’s like.” I proceeded to tell him what I had experienced with the deaths of other people. We talked for over thirty minutes, with him initiating the topics that concerned him. My role as a speech-language pathologist was to help him formulate into words those things that were too frightening to talk about.
What to Do: * Don’t assume silence means there is no desire to communicate Silence is
a form of communication.
* Don’t rush to fill the silence.
* Simplify emotionally difficult concepts
* Allow your patients to lead the discussion topics
The need to listen can be placed on a long continuum. At one end are people who think like third grade teachers: they believe there is little or nothing to be learned from their students. At the other end are people with the mentality of a Buddhist monk who view everything in life as a stepping stone for gaining knowledge. Unfortunately, speech-language pathologists fall closer to teachers than monks. After all, we’re paid to judge what’s normal and what’s not, the best way to do things, and what can we do to make sure our efforts are successful. We’re not paid to listen. We’re supposed to act. However, few people who are dying, whether it’s an eighty-five-year old with metastasized cancer or a six year old with cystic fibrosis, need a lesson (Goldberg, 2005).
I think one of the hardest things for us as professionals to do is listen without being judgmental. I’m not referring to the Rogerian counseling technique where clinicians are taught to mirror back what the client just said (Rogers, 1951). Rather, it’s coming to an understanding that our clients often know more about their needs and condition than we do (Goldberg, 1997)
For two months, I spent every Friday with Bill, a man who was dying of Hepetitis. We would drive to Lands End, a scenic place in San Francisco, and watch the Golden Gate bridge to our right and the Pacific Ocean to our left. As Bill smoked his medical marijuana to stop the nausea from his pain medication, he talked about his life. As much as I wanted to probe, I realized that it was important for him to tell someone his life history, without judging him. I rarely asked questions. And when I did, it was for clarification. His life-style was different than mine, and some of our values conflicted. But I never judged them or him. My role at that time was to allow him to communicate. At one of our last outing he confided events in his life he never told anyone. He told me he did so, because, as terrible as some where, he needed to talk about them without being judged.
What to Do: * Don’t impose on your needs or understanding of how the world should be.
*Accept your patient’s view of how their world is.
*Listen more, talk less. Think about listening 80% of the time.
Witnessing means acknowledging the person’s condition and what they are feeling. A number of years ago at a workshop, Sogyal Rinpoche related a conversation a counselor had with a dying patient (S. Rinpoche, 1993). The patient said he didn’t need to have anyone understand what he was going through-that wasn’t possible. Rather, he just wanted them to act as if they did. Your witnessing a person’s dying in a non-judgmental way can be one of the greatest gifts you can give—not just as a speech-language pathologist, but as a caring person. I requires compassion: the ability to place oneself in another’s shoes. For some, it may be difficult to feel compassion for people who brought on their own demise, such as a life-long smoker, a drug addict, or someone who practiced unsafe sex. Thich Nhat Hanh, the Vietnamese monk, thought it was possible to feel compassion for anyone by visualizing them as your mother (Hanh, 1991). Afterall, how could you deny love to someone who nurtured you when you were helpless. It’s an interesting visualization, even for those who are non-Buddhists. I found it useful when I cared for Helen, a seventy-five year old recluse alcoholic who knew she was dying and accepted it. Her ovarian cancer had metastasized and made it difficult to walk. Our interactions over a two month period never involved any discussions about dying. She had no interest in discussing the obvious. What she wanted from me and other volunteers was our presence. Having another person “along for the ride,” was enough. Our role was to accompany her on the journey, but, as she laughing said, “not all the way.” My presence gave acknowledgement to her life and death.
What to Do: * View your patients with compassion, regardless of what they have done with their
* Stand with them as the dying process progresses.
* Euphemistically and literally holding their hands.
Learning From Our Clients
At some time in everyone’s training, the idea of “being an expert” was reinforced. If not by our instructors, then by our professional organization. As we achieved successes with our clients and received their adulation, we began believing our own promotional material. Eventually, we metaphorically cloaked ourselves in a physician’s white coat, with our name elegantly embroidered and our CCC’s emboldened. We knew more than clients and therefore, knowledge traveled on a one-way streetwe talked and suggested; they listened and acted. That doesn’t work with people who are dying.
We hear the often-touted belief that professional distance is a necessary attribute (Maslach, 1993). That getting close with someone will lead to a loss of objectivity, or worse, caring too much. We’re told by well-meaning instructors, “Don’t take your cases home with you, that’s the quickest way of burning out. I began experiencing it early in my hospice work, where during my first month, four of the residents who I became close to died. Fortunately, a presentation was scheduled by a nurse would who had been involved in hospice for fifteen years.
I asked her how she had been able to accept the loss of those she cared for; how was it possible not to get professional burn-out. She immediately replied, “Love can take many forms. The love I experience for my patients involves feeling I’ve done everything I could have to make their death as peaceful as possible. I know everyone I care for will die within six months. If I focused on that, I’d go crazy or quit. But when you know you’re helping them on a journey, your love is different. So is your sense of loss. Yes, I miss most of the patients I’ve worked with, but that’s minor compared with what I think I gave them.”
What to Do: *Understand that you’re not there to fix anything. All of yourTerminally ill patients
will die, no matter what you do.
*Burn-out doesn’t come from caring too much. It comes fromnot realizing your role
is to help the transition between life and death.
Learning From Our Patients
The Buddha said that just as an elephant leaves the biggest footprint in the jungle, so does death when it comes to living (S. Rinpoche, 1995). When you are in the presence of someone who will soon die, you probably will have the greatest opportunity to learn how to live. I learned the importance of forgiveness from an ex-heroin addict whose family was delighted he was dying, since they blamed him for the death of his son. The power of compassion, watching an elderly angry woman dramatically change her life one month before she died in my arms. The need for friendship from the founder of a historic collection of gay erotic art, afraid he would die alone. Selflessness from a teenager suffering from cystic fibrosis, who was more concerned about the distress he was causing his mother than the pain he experienced with each breath. And living in the present from a woman who, while holding her infant and knowing he would be dead within a few days, thanked friends and family for a surprise Mother’s Day party.
These individuals and others provided lessons so profound, they grabbed me and said, “Listen, this is important.” I was able to receive the lessons only after I redefined my role as a speech-language pathologist. Even though I wasn’t functioning in that professional capacity in hospice, I brought into it my professional orientation (Goldberg, 2005). Throughout my career, I viewed what I did as “fixing” or “helping.” I worked with children and fixed a language problem. With adults, I helped aphasics regain the ability to retrieve words or stutterers how to use fluency-enhancing strategies. I realized that how I viewed what I did in therapy made a difference to both the client and me. According to Rachel Naomi Remen in her book Kitchen Wisdom, when you fix, you assume something is broken (Remen, 1997). When you help, you see the person as weak. With either perception, something in missing. But when you serve, you see the person as intrinsically whole, and create a relationship in which both client and therapist grow. I never realized there was a distinction between the three. When I “treated” clients I thought I simultaneously fixed, helped, and served. As a hospice volunteer, I don’t try to fix or help. I serve, and in the process learn how to live by those who are dying.
There is a Cherekee saying that “The heart is the first teacher.” As threatening as it may be, allow your heart to open. The poet Rilke, said that our deepest fears are like dragons guarding our deepest treasures (Mitchell, 1989). Your patients have the keys to the locked doors.
What to Do: *Regardless of the disease or the severity, view your patients as whole human
*Listen to people who are dying; they have profound insights into living—what to do
and what not to do.
I was at a party when Walt, a man in this 80’s, talked to me about his partner who was in a hospice ward at a facility for the indigent in San Francisco. John had a massive stroke, and after exhausting all of their savings, was “allowed” to enter the facility. After having lived for over forty years together, Walt could anticipate John’s needs just by a glance. Sometimes, even that wasn’t necessary.
For four years, he sat by John’s side on a metal hospital chair, eight hours a day, seven days a week, providing care and compassion. He was prepared for John’s death. What concerned him was John’s inability to communicate his needs when he wasn’t there. More terrifying to Walt was what John would have to endure if Walt died first. After visiting them in the hospice ward, I began making simple suggestions the staff could easily implement. Almost all were open to them. However, one person asked, “What would be the purpose of doing those things knowing the person only has a limited amount of time left?” My response was there is no time limit on the quality of life.
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