What Dying People Want




by David Kuhl, M.D.


What is the significance of human contact, of touch? In an interview with Bill Moyers in 1993, Rachel Remen, a doctor who has been working for more than twenty years with people who have terminal illnesses, and the author of Kitchen Table Wisdom and My Grandfather's Blessings, begins to answer that question. She speaks of touching as a way of healing. She acknowledges that we don't touch each other a lot and, when we do, that it's often misunderstood or sexualized. Physicians are taught that they should touch people only to make a diagnosis: If they touch their patients in any other way, even as a means of comforting them, it might be misunderstood. As Bill Moyers writes, "Touch is deeply reassuring and nurturing. It's the first way a mother and child connect with each other . . . what a mother is saying to her child with that touch is 'Live . . . your life matters to me.' Remen also describes how people with cancer often feel when they're touched by health care providers. They say they feel as though they are merely a 'piece of meat.' She reports that one woman said, 'Sometimes when I go for my chemotherapy, they touch me as if they don't know anybody's inside the body.'"

Remen now works with adults who have cancer. Earlier in her career she was the associate director of pediatric clinics at Stanford Medical School.  During her time there, one of her colleagues, Marshall Klaus, chief of the intensive care nursery, conducted a study to explore the effect of touch on infants so small they could be held in one hand. Half the infants were touched (gently rubbing the baby's back with a pinkie finger) for fifteen minutes every few hours. Those babies were more likely to survive than the ones who were not touched. Remen surmises that isolation can weaken us and touching can strengthen the will to live.

We experience touch through our skin, the largest sensory organ of the human body. The human embryo develops from three cell layers: the endoderm, the mesoderm, and the ectoderm, the latter being the outer layer. This layer gives rise to the nervous system and to the general surface covering the body—hair, nails, teeth, skin—and to the sense organs of smell, taste, hearing, vision, and touch. One of the primary functions of the central nervous system is to keep the organism informed about what is going on outside the organism. The nerve endings in the skin send signals or messages via the spinal cord to the brain. The brain analyzes the information, interpreting the effect of the touch. The brain then informs the rest of the body about the response it will have to the touch. Interestingly, the skin also informs the world outside the organism about what is going on within the organism. As a physician, the color, temperature, texture, moistness and dryness, thickness, and elasticity give me information about what is going on under the skin and within the body.

The outer layer of skin, the epidermis, contains the nerve endings that respond to touch. Dr. Ashley Montagu, an anatomy expert, has written extensively about the tactile system. He states that:  "the surface area of the skin has an enormous number of sensory receptors receiving stimuli of heat, cold, touch, pressure, and pain. A piece of skin the size of a quarter contains more than 3 million cells, 100 to 340 sweat glands, 50 nerve endings, and 3 feet of blood vessels.

It is estimated that there are some 50 receptors per 100 square millimeters, a total of 640,000 sensory receptors. Tactile points vary from 7 to 135 per square centimeter. The number of sensory fibers from the skin entering the spinal cord by the posterior roots is well over half a million . . . in the adult male, in whom [the skin] weighs about 8 pounds, containing some 5 million sensory cells."

The functions of the skin include temperature control, protection, metabolic functions, and sensation.

Touch is essential not only for the newborns but also for children, adolescents, and adults. Dr. Montagu speaks of contact between mother and child as being the first contact we experience with the world. It provides comfort, security, warmth, and food. He quotes Dr. James L. Halliday, a psychiatrist who wrote about psychosocial issues in medicine, as saying that "infants deprived of their accustomed maternal body contact may develop a profound depression with lack of appetite, wasting, and even marasmus [wasting away] leading to death." In the nineteenth century and through about 1920, the death rate for babies abandoned to institutions was nearly 100 percent. After 1915 doctors made rules requiring that babies be picked up and carried around several times a day. Handling, carrying, caressing, caregiving, and cuddling became known as basic experiences necessary to the infant's ability to survive.

Self-esteem is based on bodily relationship and connectedness, beginning in infancy and continuing through childhood and adolescence. Montagu's book Touching includes a second report by Dr. Jimmie Holland, who early in her career worked with leukemia patients at the University of Buffalo School of Medicine. In order to prevent all skin contact between patients and others, the patients were isolated in germfree rooms as part of their treatment.  They could look out of the rooms and be seen from without. They used verbal communication facilities to interact with people outside their rooms.  Seventy-five percent of the patients "experienced an acute sense of isolation, chiefly related to the inability to touch or be touched directly.  The loss of human physical contact generated feelings of loneliness, frustration, a sense of coldness, and a lack of emotional warmth." Physical contact—that is, touch—is an essential ingredient to a sense of emotional connectedness.

Terminally ill people also need to be touched. For some people, connection begins with touch, physical touch. Marjorie, who was in her early seventies, attended support groups at the cancer center. She also attended weeklong retreats for persons with life-threatening illnesses. She said that "touch is a necessity of life. We need to be touched. When you attend one of the group meetings, prepare your-self, because there's a lot of touching going on there, and I think it's magical. I really do feel that if it isn't physically healing, it is certainly emotionally and psychologically healing."

Her experience in the support group was very different from when she was admitted to the hospital for a medical procedure. "There was nobody to be with me, to hold my hand and tell jokes or anything. It was the most horrifying experience, and I was angry. I was really angry."

Throughout that initial hospital experience she felt absolutely alone, not connected to the physician performing the procedure, in pain and horrified.  She realized that for subsequent procedures in the hospital there might be value in inviting a friend or a member of her support group to join her. "I felt that I would be fine if there was someone from my support group sitting beside me and holding my hand and talking—I didn't care what they were saying, just a voice going through me while I was doing it. The result was painless, two absolutely painless biopsies."

Marjorie felt that through the touch of another person, a sense of togetherness was created and healing could occur. During her medical procedures in the hospital, her friend's voice also contributed to a pain-free experience even though she couldn't remember what her friend had been speaking about; the content of what her friend said was not important.  She also recommended that doctors touch patients in a reassuring way as part of providing care for the patient.

Dr. Lewis Thomas, former president of Memorial Sloan-Kettering Cancer Center in New York City, wrote in the early 1980s that touching is a real professional secret, an essential skill, and "the most effective act of doctors."

"Some people don't like being handled by others, but not, or almost never, sick people. They need being touched, and part of the dismay in being very sick is the lack of close human contact. Ordinary people, even close friends, even family members, tend to stay away from the very sick, touching them as infrequently as possible for fear of interfering, or catching the illness, or just for fear of bad luck. The doctor's oldest skill in trade was to place his hands on the patient."

Touch is the strongest nonverbal message that one person can give another.  But how does touch occur when it's not already a part of an existing relationship, when it hasn't happened prior to knowing that someone has a terminal illness? One way that it begins is by asking to be touched or for permission to touch, as in: "'Can I hold your hand as we speak?" "Do you mind if I put my arm around you?" "May I hold you?"

In the past, when I read bedtime stories to my daughters, the youngest would become impatient for a hug. I had roughly three seconds to put my arm around her after we had snuggled into our reading position. Any longer, and she would grab my hand and swing my arm over her head and around her shoulders.  The oldest one would say, "I need a hug." Both of them knew what they wanted (and needed). They knew they wanted to be touched as well, when they woke from a scary dream, had to walk in the dark, or were taking an unknown path.  For them, touch, connection, and holding reduced their fears and anxiety.  Security came from putting their hand into mine and knowing I was with them, physically present. In many instances that security did not require words.  Assurance came from touch itself.

Family members left behind have often said to me, "No one told me to touch my mother" (or father, brother, sister, friend). "No one told me it was all right to lie beside the person and hold them. It's what I really wanted to do, but it felt awkward, so I didn't do it. But after the person died I was very sorry and regret not having followed my own instinct." One told me:

"I stayed with Bill, my husband, as he lay dying. I feel so bad now that I didn't lie beside him on the bed and hold him in my arms! I'm reading about this now, the need to touch. But worse than that was, I sent the children away. They came to say goodbye to their father. They stood there and talked with him and said what they had to say, which was very stoic. They didn't touch him, they didn't sit on the bed. I would have liked some direction. I wish I'd been told that it's okay to lie on the bed and put my arms around him and hold him while he's dying instead of sitting on a chair. I wish someone had told me that my children should stay with their father and sit beside him, sit on the edge of the bed, touch him, hold his hand, talk to him, and stay until he dies. But there was no one. I wish someone had been there to tell me how to do it right—which I now know but didn't know then."

Would that have been what the loved one wanted? In response, I ask another question: "Is that what I would want, is that what you would want?" If so or if not, its important to let others know about your wishes now. Touch is of value to the person touching and to the person being touched.

Being touched or held can be something you want and something you fear or feel awkward about. This might arise from your personality or be due to the setting, such as a hospital. If you long for touch (or more of it), I encourage you to speak to someone you trust, someone likely to understand.  Ask someone you care about to hold your hand the next time you are together.  It might also mean a hug when greeting or parting company. For some people this is natural, for others uncomfortable. Discomfort can stem from lack of touching experience in your past, but it is never too late to start anew.  Touch is essential to one's sense of well-being. "Nurturing," "touch," and "connection"are synonymous.

Start simply: Sit across the table and hold hands as you speak. This may seem foreign, and perhaps only one or two people will make you comfortable.  But if you try this, tell the other person how you feel: "I feel close to you and would like to hold your hand or sit next to you, but I want to respect you and not impose myself upon you. I would like to hold your hand as we speak." Next, do the same thing, but without the table; sit facing each other, knees touching, holding hands, and begin a conversation. Eventually you may feel comfortable without even speaking. Perhaps you can relate a story from your past describing how touch was important to your sense of well-being. In that connection, both feel reassured.

Marjorie spoke of her experience with her mother:

"I hugged and touched my mother, which made me feel good. And I think I told you, my mother was never a physical woman, never a demonstrative woman with her children, but by then I had learned. I was well into my experience with cancer and she used to say, "I'm a brittle little lady of a hundred years." I would hold her in my arms and give her a good hug. I thought, if I break something, well, what the hell, that doesn't matter!  Touch is important. Even for the very few people who don't want to be touched, I take a chance on touching rather than being afraid to touch. Now I touch everybody."

I imagine Marjorie at the bedside of her mother like one of the final scenes in Wit, a play by Margaret Edson (and now a film) about the experience of dying. Marjorie sits, holding her mother's hand, stroking the transparent, wrinkled skin, realizing that her mother will never speak again. Slowly, without losing contact, she removes her own shoes, lifts the comforter that belonged to her mother for decades, and slips in beside her. She exchanges the hand for an embrace. She simply holds her mother in her arms, strokes her hair, and says through her touch and her words, "As you held me at the beginning of my life, I now hold you as your life ends. I want you to know and to feel the love I have for you."



From What Dying People Want. Copyright © 2002 by David Kuhl. Excerpted by arrangement with PublicAffairs. $25. Available in local bookstores or click here.