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Archive for the ‘Hospice Patients’ Category

“Do you have any ice cream?” My new patient Mrs. V., had nodded her head yes when I asked her if she wanted a massage, but clearly she had another form of comfort on her mind. I looked over on her tray and saw, among many items of untouched food, an open cup of melted chocolate ice cream. “It’s melted,” I replied. “Is that okay?” She nodded again, and I went to retrieve her treat.

Before I left her bedside to get the ice cream, I took a look at her wristband to make sure I was with the right patient. When the nurse gave me the referral, she told me that she was surprised that the patient was still alive: yet here was Mrs. V., not only alive, but asking me for ice cream.

In end-stage disease, many patients enter a final phase that we refer to in hospice as “actively dying.” In this state, we see common signs of imminent death: peripheral circulation slows, leading to discoloration of the hands and feet (known as “mottling”); breath becomes irregular, then shallow; the eyes become glassy and unfocused; the patient loses consciousness.

Actively dying patients do not usually eat or drink. The body no longer wants nutrition or hydration as it prepares to shut down; this is a natural component of the dying process. I was concerned that, even though she was asking for ice cream, perhaps her body would reject any attempt to feed her. But who was I to deny a dying woman what could be her last request? I picked up the spoon, dipped it into the melted ice cream, and brought it to her mouth.

Her lips parted, and closed around the spoon as she took in the ice cream. Then the corners of her mouth began to curl upward into a teeny smile. “Is that good?” I asked. Again she nodded. I gave her another spoonful, and then another. “Is chocolate the only flavor you have?” she asked. I looked again at her food tray and saw no other ice cream options, but spotted some vanilla pudding. When I offered her this option, she requested that I mix them together.

I dipped the spoon first into the custard, then into the ice cream. Again came the smile. A few bites later and she’d had enough. I put away the food and began to massage her left hand, then moved up to gently place my hands on her head. She drifted off into sleep and my work was done.

Mrs. V. died twelve hours later.

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Last week a new patient, Tess, was being admitted to one of our hospice inpatient units. She had been transferred from a local hospital, arriving by ambulance. Confused, agitated, in distress: my kind of patient!

Thankfully the admitting nurse agreed with my philosophy and called me in to work with Tess. I watched as she and the aide examined our new arrival, changed her hospital gown, and positioned her in the bed. Her daughter, Maria, was standing by her side, holding her hand and offering comfort. The experience of being transferred was clearly stressful for both Tess and Maria.

Once the other staff left the room, I introduced myself and offered a massage session. As is often the case, Maria was enthusiastic about her mom getting a massage, while Tess barely had the strength to nod her consent. I washed my hands and got to work.

Within five minutes Tess was showing signs of the relaxation response: her breathing slowed and deepened, her facial expression softened, and her overall muscle tone became loose and relaxed. The restlessness and agitation she had expressed upon admission disappeared.

Because Tess was being cared for in this way, Maria was able to leave her side to fill out the admission paperwork without having to worry about her mom’s well-being.

I cannot think of a better way to welcome someone to hospice.

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Sometimes in my clinical practice I encounter a situation where massage is of no help whatsoever. This is particularly true when a patient is experiencing terminal agitation.

Also known as terminal delirium, this condition sometimes occurs as patients approach the final days of life. It is characterized by restlessness, “picking” at clothing, skin, or IVs, disrobing inappropriately, hallucinating, and/or verbally abusive language. Needless to say, family caregivers find it highly distressing when their loved ones become so agitated. It is also stressful for paid caregivers to see their patients become inconsolable and uncomfortable.

The first time I encountered terminal agitation in hospice, it provided a valuable lesson about the limitations of massage therapy. Tina was an end-stage cancer patient in her fifties who had received almost daily massage for three weeks, while she was in one of our inpatient units. Every day when she woke up, the first question she would ask the nurse was: “When is the massage therapist getting here?” She was truly an ideal candidate for hospice massage.

One day I arrived on the unit and saw a changed woman. Tina was flailing about in her bed, moaning. Her facial expression was vacant and she could not make eye contact. She was clearly in distress. The nurse asked me to go and see her, thinking maybe massage therapy would help. But as I took her hand she recoiled from my touch. I quickly discovered that there was nothing I could do for Tina.

Although massage therapy is a wonderful way to promote calm and ease anxiety under normal circumstances, terminal agitation is a medical emergency that must be managed pharmacologically. Massage therapists working in hospice and palliative care settings need to develop a clear understanding about the appropriateness of the treatments they provide. This is essential to making progress in medical institutions, where massage therapy is just beginning to be seen as a legitimate treatment modality.

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Having been raised in a Christian faith tradition, I frequently came across the concept “laying on of hands” in sermons and bible study. Having left that faith tradition, sometimes I am struck by the spiritual nature of the work I have been called to do and how it resonates with my Christian upbringing.

The New Testament is full of stories about hands-on healing, reported to have been performed by Jesus and usually taking the form of dramatic miracles: the lame rise and walk, the blind now see, and all it took was the laying on of hands.

In hospice massage therapy, the healing that takes place is not “miraculous” in a curative sense, but it can be felt profoundly by practitioners and patients alike.

When I teach about hospice massage, I emphasize the physiological effects of massage on the nervous system. Scientifically speaking, massage is a clinical intervention that triggers the body’s relaxation response. It can provide powerful relief from distressing symptoms.

Psychologically, massage can provide a sense of comfort, helping to relieve anxiety and depression. Sometimes a patient has an emotional release as the result of being touched in a caring way: tears may fall freely where before they had been supressed.

And what about massage in the realm of the spirit? How do we connect with our patients on a spiritual level?

Recently I went to see a patient who had what I can only describe as a spiritual reaction to her massage treatment. When I entered her room and introduced myself, she told me she had never had a massage before, but she was delighted to give it a try.

At the start of the session she was cheerful and talkative, saying how wonderful the massage felt on her shoulder. She began telling me stories of her recent medical treatments. As I was rubbing her feet she told the tale of a life-saving intervention she had experienced, confessing that she wished that God had taken her then. She became quiet and tears started to well up. “So you’re ready to go?” I asked her. “Yes,” she answered, “but it looks like God isn’t ready for me yet. Maybe he let me stay here so I could meet you. Now I know what the angels will be like in Heaven.”

As she continued to cry, I moved from her feet and approached her head. I placed my hand on her scalp and made soothing circles. She looked at me and asked me to say a Catholic prayer that I did not know. Then she began reciting a number of prayers, including the Lord’s Prayer, which was familiar to me. I recited a few lines with her: “Our Father, who art in heaven, hallowed be thy name.” As she prayed, she entered into a deeply relaxed state, almost like a trance. I held one hand on her head and another over her chest. As I finished the session and thanked her, she did not respond. She had entered a state of complete relaxation and I could no longer reach her with words.

For this patient, faith in God was central to her concept of self. When she experienced massage in the context of hospice, it resonated within this faith and with her belief in the afterlife. As a practitioner it is not necessary to share this belief system; it is enough to support the patient’s experience of her faith as a manifestation of her bodily experience.

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My first couple of massage therapy jobs were in spas and health clubs. Although it did not happen often, I would sometimes encounter a client who crossed a line into inappropriate sexual behavior.

Little did I expect to encounter that kind of situation in hospice work.

It was my second session with this patient, a man in his 40s with metastatic cancer and intractable lower back pain. The week before, I had spent a half hour massaging his back; the massage treated his pain so effectively that he announced, “this is better than any medicine they could give me.” He responded so well to the massage that I even taught his wife, who was in the room the entire time, some basic techniques she could use.

When I arrived on the unit for the second visit, the nurse warned me that the patient was starting to act a little “weird.” He was asking staff to run errands for him, and seemed to be struggling with some serious psychological issues that might be contributing to his intractable pain. I was prepared to say no if he asked me to go to the ATM for him, but I did not feel it necessary to raise my guard any higher.

The patient turned onto his side so I could massage his lower back, as I had the previous week. Within a few minutes he had started moaning. Since he had reported being free of pain before I started, I became concerned.

“Is this hurting you?” I asked. “A little,” he replied. I cautioned him that if his massage was causing pain, we would need to stop. He said it was okay and that I should keep going.

Not only did the moaning continue, but he started squirming around. Still, I suspected nothing unusual, but I became worried that he could no longer tolerate massage. I was concentrating on the sounds and movements he was making, and then I noticed that most of the motion was coming from his lower body. He was holding his legs tightly together and rocking his hips back and forth, rhythmically, and side to side.

Suddenly it occurred to me that the moaning was not pain at all, but pleasure. We all want our patients to experience pleasure while having a massage, but he was turning the pleasure into a sexual experience. Once I recognized this, I calmly announced that the massage was over.

I didn’t make a big deal out of it, and neither did he. But I did report it to the nurse, who was not at all surprised, given his other inappropriate behaviors. Due to what I had witnessed, along with the other behaviours, she arranged for a consultation with a psychiatric nurse; his meds ended up being adjusted and the inappropriate behavior stopped.

This patient’s sexual acting-out was linked to unresolved anxiety. Massage therapists working in medical settings need to report unusual behavior, even if it makes us uncomfortable, in order to help our patients get the care they need.

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Her feet were perfect.  Long and slender, with toenails painted a sparkly shade of Grape Fanta, like any other teenaged girl’s would be.  I had no choice but to notice these lovely feet; I was massaging them gently as the patient lay in her hospital bed.

Grateful for their ordinariness, yet trapped by it, I struggled knowing that I could go no further.  Because if I attempted to massage any other part of her body, I would have to move closer to the hole in her face where her nose used to be.

Serena was under the care of Hospice due to an aggressive form of skin cancer.  It was attacking the parts of her body that had been most exposed to the sun.  Like most of us, her face had seen the most direct sunlight, and it was on her face that the cancer was its most virulent.

She was blind, and bandages covered the top of her head down to just below her eyes.  Right below the bandages her face looked like some rabid animal had been feasting on it.  In a sense, that’s exactly what had happened: the cancer was eating her alive.

When I entered her room, soft Spanish-language hymns were playing on a boom box.  Her mother was sitting on the cot by the window, stringing beads.  She had boxes and boxes of beads, and bags full of finished bracelets and necklaces. Serena was wearing one of the beaded bracelets around her right ankle, a gift of adornment any girl might receive from her mom.

“Hola Senora,” I said, as I reached into my limited repertoire of Spanish phrases.  I explained as best I could that I had come to offer her daughter a massage. She approached Serena’s bed and asked her if she would like a massage. “Si,” came the whispered assent, lisped from a mouth missing its upper palate.

I brought a chair to the foot of the bed and glanced up along her skeletal frame.  In addition to the facial disfigurement, she had large tumors dotting her skin at various sites on her body.  Although the nurse had told me I could massage Serena’s shoulders, I knew with one glance that I would not be able to.  I was afraid that if I moved closer to her face, I would freak out.

I’m aware that my admission of this aversion might seem unprofessional or insensitive.  It’s not meant to be.  It’s just that I had never before encountered such an utterly disfiguring disease.  I did not feel equipped, emotionally, to look it (literally) in the face.

Gingerly, I lifted the sheet from her feet.  When those sparkly purple toenails peeked up at me, my relief was palpable.  “You can do this,” I told myself.  “Just keep breathing, and focus on her feet.”

As I applied lotion to the only part of her body that was covered with appropriately young, unblemished skin, I looked up at her mother, who had clearly had been the one to paint Serena’s toenails. It was a way that she could honor her daughter’s beauty, to give her something that Serena couldn’t even see, but everyone who cared for her could. This one area, a demilitarized zone on the ravaged body of a teenaged girl, sparkled in the soft light.  I sat, mesmerized by the simple beauty of those young, elegant feet, and tried not to cry.

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As a massage therapist I tend to believe that my work matters. In a typical work day I get a lot of positive feedback. Over and over again my clients tell me how much better they feel after their treatments, how much they look forward to seeing me, how much of a difference I make in their lives. Not many jobs provide so much ego gratification. At the very least it’s nice to feel popular.

This is especially true working with seniors and in hospice. Towards the end of life, many patients express appreciation and gratitude for the massages I give them. Some of them tell me that it’s the one thing they look forward to in a day. Others say that it relieves their pain, or that it helps them get a few hours’ badly needed sleep.

Non-verbal patients often show signs of the relaxation response, providing essential feedback that tells me I am helping them: breathing slows and deepens, facial expressions soften, hands unclench. I walk away from those patients feeling the same kind of satisfaction I would have felt if they had said “That was wonderful.”

And then there are patients like Ms. B. Admitted to one of our hospice inpatient units after her husband had found her suddenly catatonic, our nurse asked me to see if I could help her. When I entered the room she was lying there, eyes wide open, face expressionless. Unless I know that a patient has some kind of cognitive impairment, I always speak to her as if she can understand me, so I told Ms. B. that I was there to give her a massage, and that I would start by putting some lotion on her hands. When I reached for her left hand, she extended it towards me. I took that as a positive sign and began her massage.

During the entire session she stared blankly at me: her eyes followed me as I moved around her bed, massaging first her left hand and arm, then her lower legs and feet, and ending on her right arm. I observed none of the usual signs that I look for to indicate a positive response: no change in breathing patterns, no eyelids fluttering. And because she could not speak, I was unable to ask her how the massage felt. I thanked her and exited the room feeling perplexed and somewhat unsettled.

Two weeks later I went back with M., one of my volunteer trainees. The nurse told us that Ms. B. was starting to emerge from catatonia, uttering a few words and phrases. When M. approached her and began to introduce herself, Ms. B. shouted “I’m hard of hearing!” M. leaned close to her and spoke loudly, directly into her ear, explaining that she was there to give her a massage. As she did the previous time, Ms. B. simply stared, eyes wide open, as M. began to work.

The session proceeded much the same as mine had two weeks before: Ms. B.’s eyes followed M. as she moved from body part to body part, but she showed no other engagement with, or response to, the massage. She was completely unreadable.

As M. was finishing up, and saying goodbye, Ms. B. exclaimed, “Nothing happened!” M. smiled and said “Nothing was supposed to happen.” Our patient was not, like so many others, full of gratitude and appreciation. She was simply puzzled.

Before Ms. B. was discharged, M. and I went to see her one more time, while her husband was visiting. We explained to him that we had been giving her massages, and he agreed that it was a good idea. It was clear that it gave him comfort to see us caring for his wife. Her affect, however, was unchanged from the previous week, and her response to the massage was, once again, neutral.

Situations like these challenge me as a practitioner, and as a teacher. What does it mean when a patient does not understand the treatment we are providing? How do we measure the benefit of our work when we receive no positive signals from a patient? Does the absence of negative signals suffice? And, finally, if the family receives comfort from the fact that we are massaging their loved one, is that reason enough to provide the treatment?

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