[box]Have you ever watched someone, so uncomfortable in the presence of a dying person, they couldn’t provide even a modicum of compassion? Although this article was written for rehabilitation professionals, it’s applicable for everyone, and especially for those who loved ones are being taken care of by professionals S. Goldberg (2006) Topics in Stroke Rehabilitation[/box]

 

The literal translation of the Yiddish word “tsuris” is problems. My mother defined it as things no Jewish mother deserved from her son. I was an expert at giving them to her, especially when it came to hopping from one major or graduate program to another.

Pre-med was wonderful; it was –easily understood and something she could brag about. Pre-law was all right, but, in her mind, it was not as good as pre-med. Political science had something to do with politics. Philosophy was unfathomable. My downward slide continued until I landed on speech pathology. Now there was something understandable. —or so I thought, until I heard her explaining it to a friend. “He helps children move their tongues.”

I no longer help children move their tongues. Now, as a hospice volunteer, I sit at the bedside and help children, adolescents, and adults die. As an insider, I peer out and watch professionals interact with patients who I consider to be friends. Rarely do I identify myself other than as “Stan, a hospice volunteer.”

I heard one professional telling another that I was “one of those people the hospice sends out to sit with patients and read to them.” It reminded me of the conversation I overheard between my mother and her friend. When a rehabilitation specialist comes to visit when I’m there, I move off to the side, and, without saying that I’m also a professional, watch.

And I’m mystified by what I see. While Although they are competent, I find that most are uncomfortable with death, oblivious to the psychological changes that are occurring, or remain rigidly professional. Often, all three are present.

I don’t remember receiving a lecture on death in any of my undergraduate or graduate speech pathology courses. I contacted colleagues in rehabilitation services at various universities to see if now, 35 years after I received my doctorate, students are learning about the dying process. A few thought it was mentioned in a neurogenics lecture. Others assured me it was covered in geriatrics courses outside the department—courses that were optional. A common reaction was, “Who has the time, with all the certification requirements we have?” So let’s make some time now.

Uncomfortable with Death

Dying is a natural, but emotionally uncomfortable event for patients, families, and professionals. There was a time in the Middle Ages when dying wasn’t a big deal.1 It was both accepted and tranquil; something that was a communal and public event involving ritual and mourning. But attitudes have changed in 1,500 years. We speak of death in hushed tones. We close our eyes to it, hoping that by pretending it doesn’t exist, it will go away, as do nightmares upon waking. We shelter our children and pretend a loved one who has died is “sleeping.” The medical community views it as an affront to their professional competency—something to be fought by every available scientific piece of gadgetry.

What people in the Middle Ages called “the gentle death,” we now push away as if it is a rabid dog. There is nothing wrong with delusions if they affect only the person creating them. But it becomes a matter of ethical concern when these fears prevent patients from getting what they need most—our compassion and honesty. Most people who are dying know it, despite perky smiles and ridiculous compliments from well-meaning people. When cheeks become hollow and digestion becomes difficult, no amount of smiles and “good jobs” can overcome the feeling that life systems are beginning to shut down.

While Although some patients want to pretend they’re getting better, most not only accept what is happening to them, but and want someone to talk to about it. Sometimes family members reluctantly discuss it. Possibly the agency or facility has a chaplain who visits. Most doctors can’t, or choose not to spend the time necessary to discuss a patient’s feelings. So who’s left? Often it’s other health care workers or hospice volunteers.

Hospice volunteers feel comfortable around death. We don’t avoid difficult discussions with patients. But we’re not there all the time. Remember the child’s game “tag–you’re it?”? Well, sometimes you’re it. Yes, you can tell a dying patient that you’ll refer the question to the proper person. Or, you can tell the person to wait a few days until the chaplain or hospice worker comes. But if you do that, a disservice is done to both you and your patient. You can help your patient have “the gentle death” by accepting it as natural and not running away from their difficult questions and painful concerns.

Over 1,000 years ago, Eastern philosophers spoke about the benefit of “sharp points;” –things in one’s life that ratchet-up discomfort.2 Dying is one of the sharpest. Their suggestion was not to run away, but to lean into them. It’s during these times the greatest learning takes place for the person who’s dying, their family, and, yes, even the health -care provider.

Elizabeth Kubler-Ross wrote eloquently about the stages of dying.She described the orderly steps professionals can to use to understand the process. I’ve been a hospice volunteer for over 2 years. During this time, I’ve taken the journey towards death with 75 people between the ages of one 1 month and 96 years. Never Not once did I see an exact replication of the Kubler-Ross’s steps. The linguist Korzybski said, “The map is not the territory.”I agree with him. To understand death, stop reading and become involved with your patients.

One hour spent at the bedside of a dying patient, without doing any billable services, will give you more insight into death than reading 20 books on it. The Chinese have a saying, ‘It’s better to have walked 100 feet in someone’s shoes, then to have read a 1000 books about their life.” Lean into those sharp points rather than running away from them. The poet Rilke wrote that our deepest fears are like dragons guarding our deepest treasures.As you lean into the sharp point of death, you’ll release that tethered dragon and find out more things about living than you can imagine.

Psychological Changes

Death, just like the rest of life, involves transitions. We go from youth to age, comfort to discomfort, being single to being partnered. Tibetans use the word bardo when they speak of transitions.It refers to what happens along the path from who you are to who you are becoming. It’s not a description of a physical condition, but rather it’s more of a psychological state in which things, previously thought of as solid, develop the consistency of Jell-O. For many of your patients, it will be their hardest transition. Dying is a time for honesty, to simplify concerns, to “rest in the moment,” tie up loose ends, and prepare for whatever will shortly happen.

Talk gently to them, be accepting, and, above all else, become a compassionate listener. We’ve trained to be “fixers” of problems. It often results in talking too much and scurrying around “doing things.” Yet, some of the most meaningful moments I’ve had with my hospice friends occurred when I sat quietly at their bedside. And often my quietness was also the most helpful thing I could do from them, such as cradling a woman with throat cancer as her pain became unbearable. No words, just compassion.

At a workshop on death and dying, Sogyal Rinpoche said that lectures are for entertainment, silence for deep learning.7 I would change it slightly for your clinical practice. Only use words, when you can’t give information and feelings through gestures, touch, and physical closeness. As you sit at the bedside of patients who are dying, ask yourself if the words you are about to say are necessary. Can you send your feeling nonverbally? This isn’t a time for frivolous chatting, most of which is done to hide discomfort in the presence of a dying person. Learn how to cultivate silence.

Dying, for many people, is a gaping hole signaling the beginning of a transition into the unknown. It’s true even for those having a spiritual practice. The philosopher, Nietzsche, wrote that if you gaze too long at the abyss, “it looks back and devours you.”As your patients are pushed into a transition and face Nietzsche’s hole, imagination runs wild, transforming improbabilities into possibilities. Sometimes, just your calm presence is enough to nudge the improbabilities back into possibilities. Other times, listening compassionately is all that’s necessary.

Compassionate listening? Now there’s an interesting concept. One that sounds like it comes from a new age movement in California. Unfortunately, we can’t take credit for it. It’s a term that’s over 2,000 years old and is hard to define succinctly in English. The easiest way of understanding what it involves is to use Thich Nhat Han’s simple description of how to do it: listen to everyone as if he or she was your mother.

How can you say anything to hurt the person who gave you life and nurtured you when you were helpless? During my first hospice training, I wrestled with understanding the term. I asked Frank Ostaseski, the founder of the Zen Hospice Project in San Francisco, how I can could practice compassionate listening with someone who’s dying. He responded, “You’ll just know. You’ve been doing these things your entire life.”

Although I initially didn’t understand his response, it became clear when, after I sat silently for one 1 hour with a new client who for four 4 days refused to talk to anyone, the client said, “I’m afraid of dying.” Almost effortlessly, I began discussing the dying process with him. Later, it became easier when I was playing cards with a 7-year year-old who said, “I’m not going to see you again, am I?”

Professionalism

As professionals, we pride ourselves on the vast knowledge we have amassed in our training and experience. To be a health -care provider is to be more than someone who moves children’s tongues, manipulates body parts, or is responsible for more invasive practices. But our esteemed titles are also can be a detriment when tending to the needs of dying patients. The essayist, H.L. Mencken, said, “We are here and it is now. Further than that, all human knowledge is moonshine.”

No, I’m not equating the practices of health-care providers with poorly made liquor. But, when you sit at the bedside of a dying patient, forget your title, your embossed name tag with its impressive letters, your white coat. And just see your mother lying in the bed.

There are some in the medical and allied health community that who believe this unscientific approach is not only unprofessional, but worse,also reduces objectivity and leads to emotional burn out.Nonsense! Objectivity is a two-edged sword. Although it can enable you to diagnose precisely and treat a problem effectively, it assumes your involvement with the patient is a one-way street. You dispense knowledge and the patient accepts it. What a waste!

Patients who are dying can offer you more wisdom about living than what’s contained in 100 books on life. Sometimes the lessons they provided gave me were instantly recognizable, such as the importance of forgiving and asking for forgiveness. Others took longer to understand, like why a mother couldn’t tell her daughter, who was in excruciating pain, that it was all right to let go of life. I’m still wrestling with some lessons, years after they were given.

Rachel Remen, a physician and someone who treats the dying, talks about her transition after leaving medical school imprinted with the stoic ideal of being “The “Doctor,” to becoming a compassionate practitioner who couldn’t help but become involved with her patients.Objectivity and “professionalism” create a barrier between you and your patients. I suspect that “burnout” doesn’t come from getting too close to patients, but rather from the great effort to remain apart from them. It’s effortless to be human. And Just like Ostaseski said, you’ve been doing it all your life. So let go, and plunge in. You’ll find the water is not only warm, but also a source of emotional comfort.

The Trappist monk Thomas Merton wrote: , “What can we gain by sailing to the moon if we are not able to cross the abyss that separates us from ourselves? This is the most important of all voyages of discovery, and without it, all the rest are not only useless, but disastrous.

Helping clients grapple with death is the ultimate rehabilitation therapy. As they enter Nietzsche’s abyss, you help them come out of it, and lead them onto Merton’s journey of discovery. In serving them, you’ll also change; moving you’ll move from being a mere professional to being a companion on life’s most mysterious and incredible adventure. Have a good trip.

copyright 2006 Stan Goldberg, stangoldbergwriter.com

This article can be reproduced and distributed without charge for any non-commercial project if the source is provided.

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