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Massage for the Ill
Hospice Care

By Irene Smith

Originally published in Massage Bodywork magazine, February/March 2001.
Copyright 2003. Associated Bodywork and Massage Professionals. All rights reserved.



Massage as an integral component to health care for the fragile and the ill is a rapidly growing field within the profession. This field is not only creative, but allows practitioners to work with clients in a variety of settings, each proposing special rewards, as well as specific challenges.

As a hospice home care massage practitioner for seven years and in private practice with the elderly and the ill for 10, I can say little remains the same when working in a client's home. A great deal of coordination and information is required to provide a session that is physically and emotionally safe for the client and physically, emotionally and professionally safe for the practitioner. Constant communication in the form of gathering information (intake and assessment), giving information (what we do, what we need, and limits and boundaries), and summarizing treatment strategies and experience (reporting) is required for quality assurance. When I look back over the years, there are many stories of dysfunction and discomfort that resulted from my lack of knowledge in giving, gathering and reporting information. The following highlights some of the areas of communication I find vital to providing massage for the seriously ill in their homes, as well as a brief look at the bodywork offered these clients.


The Initial Phone Call
The home-based client may call directly for your touch services, a family member may call or a client care coordinator or social worker from a health care organization may be your first telephone contact. This initial phone call is your opportunity to acquire information about the prospective client. The initial intake should include: client name, address, phone number, primary diagnosis, with whom they live, phone numbers of other team members (case manager, nurse, etc.), the client's physical symptoms, attitudinal symptoms of the client, the goal plan for massage and how to invoice for payment.

If the initial contact is the client care coordinator, you will follow up with a phone call directly to the client to set an appointment. Ask the client or health care attendant for the following: the client's current symptoms; has the client experienced massage before; can they use a massage table; is there room for a table; are there stairs; is there parking; what time of day is their energy best suited for the session; if a health care attendant is necessary; and when are they scheduled to be in the home?

One day I received a referral from a health care organization to see a client who was receiving home care. I called the client's care coordinator for my initial intake. I was told the client, Bill, was in the process of losing his eyesight and was depressed, however, he was on a new medication. Bill received four hours of attendant care daily and was still ambulatory. When I had the information I needed, I called Bill to set up an appointment. The client said his energy was best in the afternoon so we set up a mid-afternoon appointment for later that week.

The day I arrived at Bill's home, I knocked several times but there was no answer. Then Bill called out, "I can't see. I can't come to the door. I'm alone." How upsetting for both of us. We agreed I would call the office and come back another day. When the care coordinator and I spoke later that evening, she said Bill was experiencing extreme fatigue and anxiety from his new medication. He was being assessed for more hours of daily attendant care. Had I explored Bill's condition more thoroughly with him in our initial phone call, I would have known to schedule an appointment when an attendant was on-site.


If a Family Member Calls
If a client's family member is the initial contact, they are usually under a lot of stress and wanting their loved one cared for. Ask for information as gently as possible. Asking questions about symptoms may be overwhelming for them; be compassionate. Be prepared to listen to a family member tell you the whole story. There is nothing you need to do except listen. Direct the conversation gently, but arrange a time to speak to the client or the on-site caregiver to complete your intake and schedule a session.

If the family member is the on-site caregiver, and the client is unable to speak to you, complete your intake with the family member when you arrive for your first session.

If the client is receiving home care, get the family member's permission to call the care coordinator to alert the care team you have been contracted to provide massage for the client. In this case, you may complete your initial intake with the care coordinator before following up with a phone call to the client.

If appropriate, contact the nurse. Ask if there is anything he or she feels you need to know. This contact is extremely valuable. As a private contractor, it is easy to feel isolated. Establishing a relationship with other members of the health care team will keep you from being isolated and alert you to key information about your client that family members might overlook.

If a client - who is seriously ill and not connected to a care agency - calls you directly, it is wise to ask for the name and contact information for the client's physician. The physician may or may not feel that massage is appropriate. Make contact with the physician in writing. Send a brief introduction including your training and the techniques you use. Include space for suggestions or recommendations and a place for the physician's signature. This networking is extremely valuable for you and for the physician.


Reporting
Send a written report to the family member, as well as to the care coordinator of the team after each session. Write a statement including what you did, how you did it, the physical and psychological response and what time you started and ended. Sign it. Report any health conditions not on your intake. As a massage practitioner you are viewing your client's body more closely than anyone else on the team. Reporting your findings, as well as your client's responses to your sessions, is extremely valuable. Also, include any visitors who came by. If the client's physician is your health care contact, send the physician the massage reports.


Pre-Visit Communication
Convey to the caregiver or the client what will be needed for a comfortable massage:
- No food, if possible, one hour prior to the session.
- A warm space.
- At least a one-hour slot where there are no appointments or responsibilities.
- If a client is on pain medication, try to arrange a session right before a medication is given. Massage can provide the needed relaxation to bridge any discomfort between scheduled doses of pain medication.
- Two sheets - one to cover the bed and one to cover the client. Covering the bed sets a safe and professional environment for the session. If linens are not available, take your own.
- A medium-size towel for wiping off lotion and for extra warmth when uncovering the arms, chest or back.
- Two or three bed pillows, with cases, for positioning the knees and/or head.
- Light-weight blanket.
- If you are going to use a bed for massage, ask if there is a stool or light chair you can use for sitting or to prop one foot on.
- Know who will be in the home while you are there and be clear about their role.
- Call one hour prior to your visit to confirm. Seriously ill clients may forget you're coming or have emergency health concerns, or health care providers may not arrive as scheduled.

I arrived at a client's home last year and the door was open. I called out to her and got a weak response. I went in and found my client on the floor in feces. She had fallen off the portable potty and had been there all morning. She was frightened and weak, but she would not go to the hospital. The agency caregiver had not shown up.

I helped my client into the bed. I cleaned her, the carpet and the toilet, then called the health care agency. I gave my client a gentle touch session and some lunch while waiting for one of her friends to arrive. I was there for four hours. I was glad I was there because I assisted in areas where I have skill, however they were not skills for which I had been contracted. Had I called prior to our visit and gotten no answer, I could have had the desk clerk check on my client. This could have provided intervention at least one hour earlier and have prevented my arriving in the midst of an emergency.


Communication On-Site
If you are going to be alone with your client, ask for the following information:
- What is the protocol for any emergencies which may arise?
- Where are the contact numbers?


Communication with Caregivers and Family
If you are a part of a health care team, keep communication current:
- Check in and out with the caregiver on site.
- Send a written report to the care coordinator after each visit.
- Check in verbally with the care coordinator once a month or to report any changes in your client's physical health, behavior or any concerns you might have regarding your client's care.
- If you have been contracted by a family member, check in with them verbally and send them a copy of the report.

Family members, as well as health care providers, don't always understand the benefits of massage or how massage is integrated into health care. Be prepared to give a three-minute presentation on what you do, how you do it and what the benefits are. Your presentation should give a clear visual of your session.

Here is an example: "Mrs. Johnson, I've been seeing Jo Ann for three weeks. Jo Ann likes foot massage. She says it helps her relax and go to sleep. She also says her feet feel more alive. I usually talk to her for a few minutes about how she's feeling and then move to the foot of the bed. I sit in a chair, uncover Jo Ann's feet and apply a natural lotion. I provide a gentle stroking massage and also gentle movement to her ankles and toes. I stay for about 45 minutes. Sometimes Jo Ann goes to sleep and sometimes we chat for a few minutes before I leave.

Oftentimes, caregivers and family members will want to tell you how they feel. A listening ear is precious. Remember your role. There is nothing you have to do or say in this situation. Breathe, be present and set your limits about time.

Offering neck and shoulder massage sessions for caregivers on-site can ease a great deal of stress within the household. You may offer 10 minutes of chair massage or even schedule a more in-depth session for a later time. Setting limits and giving yourself permission to state them clearly is important.

For example, say "I have scheduled 15 or 20 extra minutes so I can offer a family member a neck massage. If the family member wants this service every visit, I will offer a reduced rate." Or, "I have had several clients where I provide the attendant half- hour massages as part of my visit. In those cases, I was paid directly by the attendant. In one case, I was paid by the contractor to take time with the attendants."


Everyone Has A Role
As a skilled touch practitioner, you are contracted to arrive and facilitate a skilled touch session. You are not the minister, the psychotherapist, the social worker, the sister, the nurse or the attendant. Staying in your role allows you to offer the precious gift of skilled touch and keeps boundaries within the health care team clearly defined. Stepping into someone else's role creates dysfunction within the team and fractures the impact of the touch session. It prevents the client from feeling the safety that clearly defined boundaries provide.


Treatment Assessment
In the case of a client being cared for by others at home, your primary assessment of your client's condition will come from the caregiver. You will ask for an assessment before each session. Include the following questions:
- What are your client's physical symptoms today?
- Are there any attitudinal changes?
- Are there any psychological changes?
- What are your client's physical limitations?
- Are there any limitations in positioning?
- Has any medication been given prior to the session and what are the possible immediate side effects?
- Are there any infection precautions other than thorough handwashing?
- Is there anything else they feel you should know?
- What is the client's schedule?

A visual assessment throughout the session will alert you to possible conditions which neither the caregiver nor your client is aware of. Report any findings.


The Massage Session
Going into the home to provide massage requires me to take my own personal hygiene equipment, as well as tools I will need for the massage session. I take a liquid soap, a hand towel (or paper towels), a nail brush, nail file, two pair of disposable gloves, a small bottle of lotion and something to put over my street clothes if I'm working from someone's bed. I also carry a fold-up stool.

The next step is to decide where and how the massage will be given. I've worked with clients in chairs, on sofas, on the kitchen table and in beds. This is a challenge, but well worth the time. When the venue has been decided and your props secured, it's time for the checklist:
- Get an assessment from your client if possible. Allow time for the client to respond.
- Allow 15-20 minutes at the session's close before they see other visitors.
- Placing a sign saying "Massage in Progress" on the outside of the door can be a positive support when there are roommates, family members or friends present, or other activities going on in the home.
- Be aware that even with a sign on the door, caregivers may come in to watch or an unexpected family member may come in. Be gracious.
- Secure a stool or chair for yourself when providing massage for a client who is in a bed, on a sofa, or in a chair.
- With permission, move the client's personal items away from the massage venue. Items to be kept close include tissue, trash basket, bed pan, towel, water, blanket and phone.
- Lay a clean sheet on top of the covers to set up a massage space and have a clean sheet and blanket as a top cover.
- If the client has the television on, suggest they allow you to put on some relaxing music.
- Explain to the client exactly what you are going to do. If your client is on medication or confused, keep the explanation simple and explain again as you work.
- Keep your client covered and only expose the part of the body with which you are working.
- If a caregiver wants to leave while you are in session, be clear about your time limit.
- Before leaving, return any items back to their original position.


Massaging Clients in Side-Lying Position
A seriously ill client may not be comfortable lying flat because of respiratory or abdominal discomfort, or because of rigid limbs. A side position facilitates comfort. A side position requires the client to lay close to the edge of the bed or table. One pillow is placed under the client's head, one between the client's knees and ankles, and another in front of the client's chest for them to hold.


Working in a Bed
The following sequence of positions works well for reaching both sides of the client's body in bed, with minimal exertion from the client.

The client starts on his side, looking away from the therapist. This works for massaging the back, hips and gluteals, as well as the nearest leg and foot. The therapist then moves up the near side of the body to work the abdomen, chest, arm and hand.

Next, the client faces the therapist with pillows placed as before. This allows access to the other side of the body.

This sequence requires the repositioning of pillows, moving the practitioner's stool and rearranging the bed covers.


When Using A Massage Table
Make sure in your initial pre-visit contact there is room for a table and ask if there are stairs. Taking a table may not be appropriate. In addition to the checklist, follow these protocols:
- Assist your client in undressing and assist them onto the table.
- Be clear about the effects of their medication. Be alert to vertigo and confusion.
- Ask if there are any other comfort measures your client might need during their massage.
- Stay aware of your client's ability to respond to questions or requests to move from one place to another and their ability to sense the edge of the table.
- Have everything you need before you start your session so you don't have to leave your client alone on the table.


Massage Techniques
The massage techniques I have developed for the seriously ill are based on honoring and validating the client's condition, rather than fixing, changing or correcting any specific condition.
A seriously ill client may experience decreased opportunities for movement or may be taking drugs which affect the kidneys, liver, lungs or lymphatic system. Toxins are not easily filtered from the body. Promoting a deep clearing with a seriously ill client through more standard or vigorous forms of bodywork may result in the client experiencing more symptoms.

There is always an element of psychological trauma associated with serious illness. We want to build trust with trauma through a quiet, slow, gentle approach in delivery.

This philosophy requires modification in the following four components of many massage techniques:
- Intention - We modify the intention of stimulating and clearing to calming, and from changing and fixing to nurturing and supporting.
- Pressure - Modify applied pressure so as not to injure or bruise the client.
- Speed - Rapid hand movement stimulates the body's systems. Slowing the hands produces a calming effect.
- Session length - While a standard hour may be relaxing for an active client, it may be depleting for the seriously ill. In later stages of illness, the session might last 15-30 minutes.

The following techniques integrate the compassionate heart, the willingness to serve and the art of skilled touch delivery. These techniques deepen and enhance the practitioner's role and provide a nurturing and comforting environment.
- Basic Stroking - The practitioner holds one hand still (safety hand) to act as a physical boundary and as a centering point for the client. The practitioners other hand is used in a slow, stroking movement (see Fig. 1). The heel of the hand is the primary stroking tool, the fingers simply act as a guide. Stroking is used for bringing awareness to the physical body's basic form. This brings a sense of physical awareness and clarity of boundaries. Stroking is minimal, slow and definite, and is best delivered with lubricant on the bare skin. It may, however, also be used over clothes or bedcovers.
- Holding - The practitioner lays the hands on the body applying no pressure and exhibiting no external movement in the hands (see Fig. 2). Sitting quietly, the therapist feels their feet resting against the floor and does conscious breathing. This technique may be applied to any area of the body and is especially comforting for areas of pain and for rigid limbs. Holding is an excellent technique for a client who is terrified, disoriented or confused.
- Cradling - Cradling refers to laying one of the client's limbs over the practitioner's safety arm - the still arm (see Fig. 3). Cradling a limb is an excellent way to facilitate range of motion and it provides a feeling of nurturing and support for both the client and the practitioner.


When the Session is Over
- Allow at least five minutes of quiet before speaking to your client.
- Assist them in getting off the table, if applicable.
- Assist them in dressing or getting into a robe.
If you massaged your client in a bed, remove the extra sheet. Check in to see if your client wants to keep the pillow they are holding and the pillow between their knees. Cover your client.
- Wash your hands.
- Gather your equipment.
- Conversation may or may not be appropriate. Stay alert to your client's energy level.
- If there is a caregiver, have a verbal check out with them.


Make the Time
Working in someone's home is spontaneously creative. You can take nothing for granted. Each step requires creative thought and assessment. Allow two hours for what might be a one-hour massage to ensure you're doing proper assessment. Plus, you never know how your session will take form.

For example, once a week I visit a very dear client in later stages of Alzheimer's. Just walking her to her room can take 10 to 15 minutes. She is very social and may stop a dozen times to talk. Even though I can't understand what she is saying, I interact with facial animation and say things back to her that may or may not have anything to do with what she is saying. We socialize all the way down the hallway. She lies on top of her bed on her back after only removing her shoes, which may also take 15 minutes. She may relax for 30 minutes while I massage her feet. She may then decide to sit up and I massage her back while she is putting on her shoes and socks, which can take 15 or 20 minutes. When the massage session is over, we start the walk down the hallway again, most often stopping to look at a window view of the ocean or just chat. She then walks me to the door which can take another 10 to 15 minutes.


Teaching the Caregivers
With the permission of your client and when there is interest, expand your role by teaching the caregivers a simple touch technique. This may be as simple as someone watching and then joining in the session.

While working with one client, Michael, I noticed his father would come and stand at the door. One day I invited him to participate in the foot massage. We sat next to each other and massaged Michael's feet. How precious to teach a father how to re-connect through touch with his son dying of AIDS.

One of my first hospice clients was a 7-year-old girl with a brain tumor. Her mother was in such deep grief that it was hard for her to hold her daughter. The sessions shortly became the mother lying in bed holding her daughter while I massaged both their feet.

I find that the most precious gift I bring into the home is the permission for family members and friends to re-connect through touch.

The depth of intimacy we experience while working in someone's home and the feelings we confront working with seriously ill clients need to be shared and validated. Seeking support from other practitioners with like experience is an integral component to the work. Seeking support is a responsibility, not an option.


Conclusion
Massage in an ill client's private home can be inspiring, intimate, challenging, demanding and rewarding. It may not look like massage at all, as you know it. A major part of the reward is experiencing how expansive massage really is; how far massage can stretch and how valuable we are as skilled touch practitioners in mainstream home health care.

Irene Smith is an internationally acclaimed author and educator. She is founder and director of Service Through Touch, a non-profit organization dedicated to educating the public in the need for skilled touch and how to provide it for the seriously ill. Smith has provided massage for the ill and the dying for 18 years. For more detailed information on Skilled Touch for the Ill and the Dying in home and facility care, and/or a schedule of training programs, contact Smith at 41 Carl St., #C, San Francisco, CA 94117; phone 415/564-1750; fax to 415/564-1750; or e-mail to touchfortheill@juno.com.





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